Leaving Chemo Behind

I notice more changes in Jack every day as the chemo starts leaving his body. Most of these changes are good, and others are not so good but are likely temporary.

I have to say that as much as I want to leave chemo – and the whole experience of cancer – behind us, I can’t help but be reflective. We lived with treatment for more than three years and much of it became routine (albeit unpleasant routine). Suddenly we are in a different routine and even though it’s a normal life routine (mostly), it’s new again and quite a change. And even though we’ve lived with a regular life routine before, it’s new to us because we have been so changed by Jack’s illness.

So please bear with me as I continue to write about living with – and after – cancer. There is still so much to process.

Jack and Dez

Jack and Dez

 
The first change I noticed in Jack after chemotherapy ended was the increase in his energy level. Less than a week after ending treatment, he woke up on his own and popped out of bed with all of the vigor of his pre-cancer self. Now, he doesn’t jump out of bed ready to face the day every morning, but most mornings he is fairly easy to rouse now. As I posted on Facebook the first day this astonishing thing happened — when you have a young child, you spend a good deal of time wishing they wouldn’t wake up so damned early every day. That wish changes when you have a chronically ill child who sleeps in every day.

So even if he is back to waking up early on weekends, I have a new appreciation for the early rising!

With that said, MY energy level has not increased in alignment with Jack’s! As much as I’m celebrating the return of my kid’s bright-eyed and bushy-tailed side, I am also finding myself wishing for quiet and solitude more often. It feels like all of the energy Jack couldn’t muster over the last three years has simply been stored up and waiting…and now it’s a flood.

I’m hoping his energy level will get to be a bit more manageable with time. I am sick of hearing myself tell him to please stop shrieking like a raptor or to not be so wild and IN his brother’s face. Sigh.

Today as I felt a headache coming on, it occurred to me that I hadn’t heard Jack complain of a headache in a while. While on chemo, he essentially lived with a headache all the time. He got used to it and only asked for Tylenol when it got particularly bad – that tended to happen 1-3 times a week. When I asked Jack today when the last time was that he had a headache, he couldn’t remember. That’s a good thing!

Jack’s body is getting rid of the chemo in a physically noticeable way, as well. The meds had dried out his skin quite a bit, damaged the nail beds on his two big toes, and interfered with the process of normal skin shedding, creating some discoloration in areas. He also became extra sensitive to the sun, so even limited sun exposure resulted in him being very tan (and looking like a raccoon when he takes off his glasses). Now his skin is reacting to the lack of chemo in his system – his throat has broken out in an itchy rash (mild but still annoying) and it has edged up to his cheeks a bit. His lips have become chapped, as well, and he is even thirstier than he was when on the chemo. Clearly his body is trying to get rid of the junk and work on repairing itself.

That is also clear in the amazing increase to Jack’s appetite! He has eaten like a bird the last three years and since he was diagnosed at 5.5 years old, he has gained only about 8lbs (and didn’t consistency maintain that). He has gotten taller during that time, but no matter how we tried to add in calories in the absence of a decent appetite, he has remained on the disturbingly thin side. 

We don’t really have to worry about adding calories now – we just need to keep the fridge and pantry stocked. Jack eats ALL.THE.TIME. He wakes up starving, he eats everything in his lunch (whereas before we threw away so much of it that he didn’t eat), and he snacks constantly. All his meals are bigger now and he generally clears his plate. And then asks for more. He is kind of a human garbage disposal now!
I’m looking forward to his knees being less knobby even though that means I’m also going to be spending a ton on new clothes.

It’s kind of a strange time. I had expected life to calm down with the end of treatment but it hasn’t quite done so. It’s better, but it will still take time to let go and settle into life post-treatment.

School, Special Needs and Sugarcoating Childhood Cancer

Yesterday I met with Jack’s principal and the district nurse to update our 504 plan. We are getting access to a home educator three hours per week to work with Jack when he can’t make it to school. I have to give HUGE props to Jack’s teacher – she has really stepped up to get us support and arranged this meeting in the first place. I can’t even express my overwhelming gratitude toward her! I’ve been much too occupied with trying to get Jack’s health stabilized and was just going to wait on the school issue (especially since he was keeping up anyway). But it was done for me! People can be really amazing!

I brought a letter with me from our oncology office regarding the need for IEP assessment, as well. Back in the spring when I requested an IEP process be started, I apparently did not do it in the exact right way because the district ignored it and had the school work with us on a 504 plan only. I didn’t fully understand the difference between IEP and 504 at the time, so I didn’t push the issue. Since then, I’ve learned a lot more about supporting kids with cancer in school and seen that even this far out, new side effects can pop up. At Camp Okizu earlier this year it was made clear that IEPs are really important for kids with cancer because even if they aren’t showing any significant issues right now, late-term effects are very common. Baseline testing can be really, really valuable when/if problems pop up later.

So when Jack was hospitalized in August, I brought up the issue with the hospital social worker and she drafted a beautiful letter for us! I’ve been sitting on the letter because Jack has barely been IN school anyway – it could always come later, I thought.

The principal took the letter in stride, but the district nurse was clearly flustered by it. Immediately reasons why she thinks we don’t need an IEP came pouring forth. I don’t completely disagree with her – Jack has to be in school to get services and he’s barely been there at all right now. Plus, the IEP requires a lot of assessments and that can be strenuous.

But then the district nurse said, “Well, treatment has come a LONG way! Most kids don’t have any lasting effects!”

And then I kind of wanted to punch her.

I wanted to tell her about how few new treatments have been approved for use in children and that oncologists are still using the same drugs developed between 1950-1970. In fact, the FDA has only approved ONE new drug exclusively for pediatric patients in the last 20 years – despite the fact that the prevalence of childhood cancer has risen 20% in that same time frame*.

I wanted to tell her that she’s wrong – in fact, two thirds of kids will have long-lasting chronic conditions that are caused by the very treatment saving their lives.

I wanted to point out that while more kids are surviving cancer, side effects from treatment are still a huge challenge. Quality of life for childhood cancer survivors needs a lot of improvement.

I didn’t say those things, but I did tell her that Jack had been screened for sensory issues and further testing was recommended. I informed her that we’ve already seen an impact on his abilities in math and physical education. I told her we need a baseline in case he has complications later.

“Well, we don’t want to push him physically when he is going through treatment,” she said.

Ugh. First, you don’t need to tell ME that. Second, that’s not what this is about, lady! It’s about preventing further decline and ensuring the best possible future for Jack.

The nurse did point out that an IEP does not provide a home educator, which makes the 504 more beneficial at this time. But the home educator was apparently a special benefit anyway and it ends January 7th. Because of that, we agreed to stick with the 504 for now and then meet again to reassess in January (which happens to work anyway – not much to be done about any of this during the holidays).

I came out of the meeting with mixed feelings. I am happy that the school is supporting Jack with the 504 plan and there was absolutely no hesitation as far as that was concerned. I’m a bit concerned about future struggles related to the IEP and assessments, though. I’ve heard a lot of negative things from other parents trying to get IEPs for their kids and based on this interaction, I’m just not confident that this will be easy.

At least I’m getting better at dealing with hard things, right?

Later in the afternoon I picked Jack up from school. One of his classmates came up to ask me if Jack really did have cancer and how he got it. I told her yes, he does, and we don’t know how he got it – sometimes people just get cancer. She seemed like she had more questions, but Jack started pulling on my arm and she walked away.

I hope we didn’t scare her. I wanted to give her a better answer but I didn’t have one. As much as I’d like to deny the reality of what we are living with, sugarcoating it isn’t the right answer.

————–

* Source: Unsung Heroes by the American Childhood Cancer Association, published 2011. (This link opens a PPT file.)

Just Write: He’s Okay…Mostly, I Think

“How’s Jack doing?”

I’ve been asked this question at least five times so far today. Each time I give the same answer in the same way, “Yeah…well, eh, mostly. He will be okay, I think. He’s just not feeling well after chemo yesterday.”

He was doing just fine last night. In fact, he was very energetic and LOUD, humming or squawking while playing with his Legos. It was overwhelming to me, as I’d just come home from my trip to Type A in Atlanta. I wanted quiet.

This morning, though, it was too quiet. Jack crawled on the floor from his bedroom to the living room. He laid down on the couch while eating breakfast and I covered him with a blanket while pushing play on iTunes so he could listen to The Postal Service at low volume. He ate his waffle slowly, and afterward he leaned on me to get to the bathroom to halfheartedly brush his teeth. Then I picked him up and carried him back out to the couch.

He talked in hushed tones and complained of stomach pain. I smoothed his hair away from his face as I took his temperature – 98.0 degrees. I asked if he wanted to try to go to school for a bit and see if he felt better. His big brown eyes squinted up at me and he said, “I just don’t have any energy, Mom.”

“Okay, honey. I’ll tell David to come home from work. You just rest,” I replied.

I looked at our finances while I waited for David to come home from work. I wondered if we could somehow make it work on one salary so that I could stay home full time with Jack. I worried this was a pattern that would not go away. I added and subtracted and, with a knot in my stomach, acknowledged that it was impossible – we have too much debt and a large mortgage payment.

I called the clinic to get confirmation of Jack’s ANC. The nurse told me it was sitting at 690, which is fairly decent but not great. She asked how he was doing and then said, “Call us if he isn’t feeling better by the end of the week.”

I called the school and answered the question again. Then I drove to work, where I told a few more people that Jack wasn’t feeling well. I got a call from my sister in the afternoon, and I spoke to one of the care providers at Jack’s after-school program – both asked and I explained in that halting way.

Jack’s okay…mostly. I think. We’ll see.

****

This post was inspired by Heather’s Just Write – an exercise in free writing your ordinary and extraordinary moments.

My Boy, Since Cancer

Since Jack was diagnosed with cancer there have been both sweeping changes and little changes in our life. Some are harder to describe than others. Aspects of his personality that were there before might now come out in a more noticeable way, or they might be more hidden, protected. Jack is still himself, of course, but the version of him we are living with now isn’t as steady or balanced. I wonder how much of him is changing permanently because of this experience.

I’m not sure I can still describe him as a “happy-go-lucky” kid, for instance.

His mood can change on a dime, and he is VERY sensitive. He is quick to cry, quick to anger, and quick to feel defeated. No amount of good-natured teasing is allowed. A simple behavior correction or disagreeing statement will send him running to his bedroom with an, “I’m going away from you now!” If he gets angry, he’ll growl and even hit himself in the head.

Jack is great at interacting with adults now. Often it seems he prefers it; after all, adults behave less erratically than kids and are more likely to give him what he wants. Other kids require more negotiation, more effort to communicate, and a jumble of emotions, including frustration. Being isolated from social situations like school and daycare for nine months has led to Jack avoiding socializing with kids if he can help it. It even takes cajoling to get him to attend a birthday party.

With that said, it can be difficult to interact with Jack due to his lack of attention span. He has so little focus. Questions must be repeated several times, and he needs constant reminders – within seconds of each other! – to get him to do anything at all. He is distractable, flighty, and more forgetful than ever.

His skills with art are as great as ever, but any math he knew from Kindergarten has eroded (although we’re hoping this can be regained fairly quickly). His interest in reading has lessened, likely due to headaches and side effects from chemo. Since he is easily frustrated, he typically doesn’t stick with new things long enough to improve at them.

He’s been a fairly thin kid since he reached the toddler stage, but now he has ZERO muscle definition. He is skinny as can be – the baby fat is gone, too. His eyes are a little sunken with shadows, and his skin is so, so dry all the time. Despite continuing to go on hiking adventures with his dad, he is quickly winded with any activity – he no longer runs everywhere or challenges us to race to the door.

He eats like a bird (since the steroids were left behind) and his diet is limited. The full array of things he will eat includes: carrots, cherry tomatoes, cheese, salami, rice, grapes, apples, edamame, chocolate, waffles, pretzels, seaweed and milk. No more chicken. No more fish. No more peanut butter and jelly. Definitely no yogurt! He’s even less likely than he was before to try new things, too.

It’s not all bad, and things could definitely be worse. Things take longer, are more frustrating or serious, more worrisome. He has not been unaffected by all that cancer has brought in the last nine months.

Still, he’s HERE and he can still smile. He’s growing, he’s still learning, he’s still a spectacular kid. I can hold him and we can laugh and giggle together. He’s still my sweet, Scooby-Doo-loving, alien-impersonating, imaginative and fierce little boy.

 

He’s still Jack.

Delayed Reactions

Jack’s out of the hospital. Thank goodness. Today he is at his first Cancer Clinic appointment getting an infusion of chemo. I’m looking forward to him coming home, and hope he isn’t too sick afterward.

I keep trying to tell myself the worst has past – that the prognosis is good, that so many cancer cells have already been zapped by the chemo, that the disease won’t progress. I know these things in my head. Still, my heart aches. I struggle to get out of bed in the morning, to eat, to do anything to take care of myself. When Jack isn’t here I don’t know what to do. What was life like before this diagnosis? What did I think about when cancer didn’t fill my every waking moment? What if Jack isn’t one of the 90% of kids cured?

I keep thinking about how all of this almost went undetected. I almost didn’t take Jack to the doctor. We almost didn’t opt for a blood test to “confirm” anemia. It would have been so easy to dismiss all of his symptoms as a combination of fighting off a cold and returning to school after a long break. It serves no purpose to think about these things but they are invading my mind nonetheless.

I am very much shell shocked. I got through the crisis period without completely freaking out, but I didn’t escape the freak-out – it’s just happening after the fact. My brain and body are not cooperating. I can’t think straight and I feel tired and/or sick to my stomach all the time. I started getting angry at the piles of boxes in our house – not that I don’t appreciate everyone’s thoughts and generosity but I just want to go BACK. I want to NOT need any of this stuff. I’d much rather have someone take this nightmare away. So when I look at the boxes and think about what they are for, I have this irrational anger…and then I get angry at myself. 😛

I can keep myself busy some of the time. My friend Kurstan ventured out to Target with me this weekend and I bought storage for medical supplies and cleaning products. I came home and organized a bunch of the house, put away the laundry my friend Katie graciously washed while we were away, and started washing items we brought home from the hospital. I’m back to work this week, as well, but I’m having trouble focusing on the simplest of tasks. Maybe I need more coffee.

All of our friends and family (and even strangers!) are being so awesome and loving and kind to us. I really do appreciate it, despite this cloud over my head. I haven’t once felt alone since this all started – I feel a community of support behind our family. I just wish the occasion hadn’t arrived where we need this support…