So Many Experts, So Few Explanations

We’ve seen quite a few doctors over the last week to address Jack’s recent paralysis incident and an increase in headaches that don’t want to go away. Two pediatrician visits, one neurology visit, and lots of phone calls have occured. We have one more appointment Friday with the eye doctor just to make sure things are okay.

None of the doctors had answers for us. No one knows what caused the paralysis and the headaches seem to be tension headaches. Everything looks benign and so we will do nothing for now and hope it goes away (and the paralysis incident doesn’t recur). Perhaps being out of school will help.

Jack’s pediatrician has been great during all of this. He is really good at following up on what is going on with Jack even when we don’t reach out to him directly (usually we call the oncology clinic because we tend to assume whatever is happening is probably due to chemo). He took me aside after the appointment yesterday to talk with me privately, away from Jack. He wanted to know how I was doing and let me know that that we could come to him anytime – that he would figure out what is going on so that we don’t have to. He even went so far as to say he’d noticed that the oncology clinic seems to feel that I’m a worry wart since the things I report that are happening seem to differ from what his dad’s household reports. He doesn’t seem to share this opinion with them, and understands that kids are unreliable when reporting illness – and this is especially true with Jack.

To give an example, if I reported to the docs that “Jack was feeling weak” – it would be because Jack told me that he felt like a chicken filled with whipped cream instead of bones. Jack’s dad would usually not think anything of that kind of statement coming from Jack, other than that Jack is a bit goofy and unique in the way he describes himself. If Jack reports that he got a weird shivery feeling (but he doesn’t feel cold) – I would check his temperature (more often than not he’d have a temp, even if it was slight, or it would be an early sign he was coming down with a cold). Jack’s dad would just assume he was chilly.

I don’t know if this occurs because Jack spends more time with me or just that he tells me more about his feelings or maybe I am some kind of master decipherer! But unfortunately the differences in what is reported between households has the oncologist questioning ME instead of his dad. And I guess maybe they prefer to hear that Jack is doing fine on chemo.

This is partly why David is taking Jack to more appointments these days – to show that it’s not just me (and also to spare me the stress of dealing with these jerks). But it seems that a lot of the damage has been done in the oncology office’s eyes, so we just deal.

In any case, the talk with the pediatrician yesterday was both reassuring (that we have SOMEONE who understands what is going on and who will take the lead on monitoring Jack’s care from a holistic perspective) and frustrating. It’s pretty upsetting to feel that I am not being respected by my son’s oncologist, someone I have to rely on to cure and keep my son alive, and it seems the pregnancy hormones have me a bit more sensitive when it comes to feeling judged negatively as a parent. I’m having a hard time shaking it now that I’ve been reminded.

David and I avoided asking Jack how he was feeling this morning and just sent him off to school, fingers crossed that he would last the day. And it seems he has. There are only 7 more days of school left until summer break, so hopefully we can make it through and we will all get a break from the grind.

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.

 

Hope Versus Belief

It was a bad week. It was somewhat expected – for some reason, bad shit tends to happen surrounding my birthday. Every freaking year (the most famous year being when my brother went to jail and David lost his job). So when I heard on the Friday before my birthday that my brother had physically assaulted my mom, I knew this year would be no different. Still, I hoped it would be and all week I adjusted my birthday plans, trying to counteract the crap being flung at me.

Let’s see how that worked out, shall we?

Jack came down with the stomach flu on Monday. We spent 5.5 hours in the ER because Jack got a fever of 102 and became dehydrated from all the vomiting. Our experience in the ER was horrible. Cancer patients are supposed to be isolated from the general population…but that didn’t happen – we were told to sit in the waiting room and then the lady next to us started vomiting immediately. I put a mask on Jack and moved away from her. After an hour and a half, I had to call the oncologist on-call and asked what we should do – perhaps drive to another ER? Fearing we’d face the same kind of wait at the Oakland ER, the oncologist called to complain and we were moved to a gurney in a hallway. I later had to be asked to be relocated because a lady nearby started hitting herself violently and muttering under her breath. And nearly four hours into our visit, I asked David to call the oncologist again because we were STILL waiting for an IV and antibiotics – even though cancer patients presenting with fever should receive antibiotics within an HOUR of arrival. The oncologist chewed the resident ER doc a new one and we were given our own dedicated nurse within five minutes of that call…apparently the clinic is filing a report about the ER, as well.

poorrating

Jack has something to say about the ER visit.

Anyway, Jack started looking better immediately after getting IV fluids and antibiotics. He was doing well enough to go to school for a few hours on my birthday (Wednesday). I was feeling ill that day, so I stayed home and slept. I said it at the time and I’ll say it again – that was a decent way to spend my birthday. Nothing bad happened while I slept.

Thursday Jack woke up feeling ill again. His labs showed that he was neutropenic and we were told (with a sigh of concern) to stop chemotherapy.

Friday morning at 4:30am Jack awoke from a bad dream and started shivering uncontrollably. His temp hovered around 100 degrees. When I went back to bed, I warned David that it would likely rise above the 101.5 threshold (I had a work commitment that I could not miss). Right after Jack woke up for the day his temp spiked. He was on his way to the hospital by 8am. He was admitted and put on antibiotics for the second time that week. He was swabbed for the flu, RSV, and c.diff. The c.diff came back positive (probably acquired during that extended ER visit!) so he was put on a second antibiotic.

Jack’s ANC had somehow skyrocketed overnight, though – from 341 to 4,774. We don’t recall it ever being that high since his diagnosis almost two years ago. One of the oncologists at Kaiser said that was a high ANC for healthy people. His body is working hard to fight these illnesses. We are surprised – and concerned – that he actually has that ability considering that he is supposed to be immunosuppressed. But I guess a night off of chemo was all it took.

A bit of an explanation here: every time Jack’s ANC dips below 500, oral chemotherapy is stopped. When his ANC goes back up and the chemo is restarted, they start it at 50% of the highest tolerated amount before suspension. The dose is ramped up again over time as long as his counts stay over 500. This is at least the third time since August that Jack’s chemo dose has been suspended and restarted due to neutropenia.

Back in early August, pre-hospitalization, he was up to eight chemotherapy pills on Mondays. He is now down to two chemotherapy pills on Mondays. Two days a week, he takes no chemotherapy at all. That is not at all how it’s supposed to be to maintain remission during treatment.

Over the last four months, Jack’s body has become less and less tolerant of the chemotherapy he’s been getting for nearly two years. The doctors cannot seem to explain to me why that is. And it’s worrisome because he can’t consistently stay on high enough amounts of chemotherapy to be sure that any lurking cancer cells are held at bay.

In other words, every time chemotherapy treatment is suspended or doses are reduced, the probable success of the treatment is decreased.  And every time that happens, our worry increases. We worry when there are new symptoms with no apparent cause. We worry that so many of the issues Jack has had over the last four months so closely resemble the symptoms he presented with at diagnosis. We worry every time the oncologists shrug their shoulders.

Oncologists, don’t shrug your shoulders. My son has cancer and you haven’t seen these issues before? Go talk to other oncologists and FIGURE IT OUT.

Ahem.

When I mentioned on Friday to a co-worker that Jack was going back to the hospital, she tried to reassure me – “Jack is going to beat this.”

I hope that is true – I hope with all of my heart. But so much of this cancer journey has not gone as we were advised it would and so many things are left unexplained by our oncology team. So I’ll believe it when I see it.

Jack Star, A Poem

This is a poem that one of Jack’s friend’s mom emailed to me one morning. We were dealing with his health problems and she wanted to provide some encouragement. I’m sharing it with her permission:

For Jack (by Anonymous)
Jack you are a bright shining star
I see this star in your eyes
I see this star in your smile
my heart breaks when the star seems dim
when you don’t feel so good inside
But even when it seems dim, hiding temporarily behind a little cloud -
Your star is shining just as bright and is just waiting to burst out again when it gets its first chance
Jack you are simply amazing to me
You shine when you draw your masterpieces
You shine when you tell of your fascinating adventures
You shine when you run fast and when you take your time and walk slowly
You shine when you are quietly reading your books
You shine when you notice the littlest bug on the tip of the leaf
I bet you even shine with your eyes closed when you sleep
So many people love you and are cheering you on-
All these people are saying “we love you Jack – keep on shining!”
Jack I pray blessings for you beyond what you could ever imagine
Thank you for being you – Jack Star -
Thank you for shining so brightly to us all

Twist Me Up And Wring Me Out

It’s only Tuesday? I thought as I stared at the pill organizer. How is that possible?

The anxiety in my chest grew. But that’s what day the organizer told me it was. The next dose of medication was right there. My phone agreed that it was Tuesday, as well. I shook my head and sighed.

I can’t wait until Friday.

Yesterday had involved an insulting call from the social worker at the clinic: “Um….hiiiiii. How are you today? How’s Jack? Um, I’m calling because Gina (the child life specialist) and I thought we should sit down and talk with you on Monday about…umm…Jack’s…school isssssuuuuues.”

My reply was something like, “Right, well, I know Gina thinks it’s school avoidance but I really don’t think that’s the case. Jack is very upset with himself when he can’t make it to school. And this isn’t new – it’s been going on since treatment started – it’s just that we thought it was normal due to the intense treatment. He was missing school then anyway. But treatment is less intense now and he still has these problems and he’s supposed to be able to go to school. In any case, I won’t be there on Monday – his dad is bringing him into the clinic. You can talk to him if you’d like.”

“Oh, well, okaaaay. Well, it’s you we’d like to talk to. So, um…alright. We won’t do that then.”

And then she (absolutely the least helpful professional I’ve ever met) droned on and on. She said some stuff about how special and smart and sensitive Jack is and at some point I just tuned her out. Sure, she WANTS to help…but she is completely inept. I could hear her grasping for the proper words to use when talking about Jack’s ‘issues.’ It was painfully obvious that she was stepping lightly. She was in parenting territory, something that she’s proven before that she knows nothing about, and I hadn’t even asked for her help.

Lady, turn back now. You don’t belong here.

A couple of hours later, I chatted with our nurse case manager about Jack’s lab results. They were good enough that he could the next day’s dental appointment, but the acidosis hadn’t improved at all over the weekend, so they instructed us to increase the sodium bicarbonate from two pills a day to four. And let me know that chemo can’t be taken at the same time as bicarb or anything else…which I hadn’t realized before.

Oops. I’d been screwing up the pill administration for…oh, almost two years now. Great.

Later that evening I took my 13-year-old cat to the vet and walked out of there $120 poorer and with no definite answers. ‘Cause that’s how I like to party.

So today, as I stared at the pill organizer and the bottle of antibiotics sitting next to it, I shook my head and sighed. Really, how could it only be Tuesday?

I gave Jack four horse-sized antibiotic pills. He actually chewed them all up without incident.

I was more than surprised.

I asked Jack to pick out his own DVD to watch at the dentist office (of course he chose Dr. Who) and off we went. It would be okay…I hoped.

The appointment went well, all things considered. He certainly yowled less than he did at his last appointment. His teeth got cleaned and x-rays were taken and that’s what matters, right? Not the stand-offish dental hygienist who clearly thought that the fact that he wouldn’t sit still was a discipline issue. Not the tears all over my kid’s face from being essentially trapped while he was poked and prodded in a sensitive place.

[Take a 7-year-old who isn't a great brusher, add a blood disease and suppressed immune system that makes it dangerous to floss, and what do you get? An uncooperative dental patient.]

Halfway through the appointment, Jack complained of chest pain while laying in the tilted-down chair and it only got worse. We went to the store to grab some tums (I’m not organized enough to carry them with me wherever I go yet) and sit for a bit while I had a warm beverage to calm my rankled nerves. I had to carry Jack through the store and he slumped in his chair when we sat down. After half an hour, the tums still hadn’t helped.

So we followed up that dental appointment with a trip to the ER, where Jack got an EKG and a chest x-ray per his oncologist’s orders. They gave him Maalox and, after a while, his pain had gone from a 5 to a 1. They sent us home.

This morning in between staring at the pill organizer with consternation, giving Jack five spoonfuls of pills in nutella, and attempting to get us both out the door and emotionally prepared for the dentist, I’d forgotten to administer Zantac. I’d given him four antibiotic pills, two sodium bicarbonate pills, and one Diamox pill…but forgot the antacid, which is a liquid.

Ugh.

I bet tomorrow I’ll stare at that pill organizer and shake my head all over again.

***

We Just Don’t Know

Here’s what’s going on in our medical mystery world right now. (Note: I wish I had the brain power to write this more better but I just don’t. I won’t be able to decide if any of this even makes sense. If you know an oncologist or neurologist or some other amazing person who can decipher medical crap, please feel free to seek their opinion on my behalf. Because I’m losing my mind.)

Yesterday Jack woke up with thigh & pelvic pain and complained that his legs were feeling “floppy.” (The best guess as to what “floppy” means is weakness. When his legs are tested, he definitely has strength but no endurance.) He couldn’t walk…for hours. I carried him everywhere. He sat on the floor while brushing his teeth and crawled to the living room if I wasn’t right there to pick him up.

He also complained, at various times, that his back hurt and his sides (kidney area) hurt and his chest hurt. He’s on ranitidine for heartburn and we give him tums, too. His kidney function tests look pretty good. He’s going to the bathroom normally…

The pain and floppiness comes and goes and doesn’t seem to be related to anything. It does seem to be more prominent on the weekdays, which could be because he’s taxed more by school but who knows. I mean, on the weekends he doesn’t have to get up at 7am and has a lot more time to laze about.

New symptoms crop up every now and then. The other day he trailed off mid-sentence when answering a question. Maybe he was just tired? Maybe not? He has pains in his joints sometimes, which is not uncommon with his meds anyway. He had a period yesterday where he felt cold sensations on his body (trunk area), as well.

So far the docs have lowered Jack’s Diamox dose to help with the acidosis and the floppiness. It hasn’t helped yet (after two and a half weeks at the lower dose).

Yesterday the docs said, what the hell, let’s try to give him sodium bicarbonate and see if that relieves his symptoms! Even though the acidosis is mild and most kids at that level don’t have any issues, maybe Jack is just more sensitive to it.

I’ve talked to all his doctors and the nurse case manager multiple times on an almost-daily basis. They don’t know what’s going on. We keep hearing suggestions that this is related to school avoidance. While that is possible, it’s really hard to buy when the kid is yowling in pain and refusing to walk for hours. And when he berates himself and hits himself in the head because it’s another day of him missing school?

I just don’t know. It doesn’t seem to fit.

Sure, he doesn’t like school very much and he doesn’t look forward to going. He thinks the subject matter is boring. But he has friends and loves his teacher and being at home is pretty freaking boring.

So everyone is scratching their heads. If it’s not a psychological issue, then other (also unlikely) possible explanations are:

  • Jack is more aware of what is going on with his body than your average kid, so is more sensitive to (and vocal about) the affects of even mild acidosis.
  • Jack has a neurological issue going on.
  • Something is going on with the cancer and they just can’t see it for some reason.

The sensitivity to acidosis is likely at least part of what is going on, but we’re not sure that it explains everything, particularly when the symptoms are getting worse but the numbers are pretty steady. The bicarb he started last night should answer that question one way or the other.

A neurological issue…would it come and go? I have no clue. He’s been examined by a neurologist for neuropathy and she said he shows very few signs of nerve damage – nothing that would suggest he would be unable to walk sometimes.

And then there’s cancer, which is what comes to mind first since that’s what he’s fighting anyway. The oncologists say that it would be VERY unlikely for relapse to happen while still in treatment. But, it does happen…rarely. Jack’s labs haven’t shown anything unusual, though. Cancer can hide in the spinal fluid…but Jack didn’t have it in his spinal fluid when he was diagnosed, so it would be super weird for it to appear there now.

Not impossible, but very unlikely.

The reason why I’m keeping this possibility on the list and asking questions about it is because when Jack was first diagnosed with Leukemia the symptoms were a lot like this. In fact, he had a virus around Christmas and even once that cleared up, he had weird issues. Pains that moved. Symptoms that came and went and were in different parts of his body at any given time. One minute he would be in pain on the couch and the next he’d be completely normal.

We worried he was trying to get out of school. Alas, he wasn’t! And thank goodness we had him checked out!

But he had a (slight) fever then. And he doesn’t now.

Anyway, he goes in on the 25th to receive chemo in the spine, so they can check the spinal fluid out then to be sure he’s cancer-free. Fingers crossed!

I just want him to feel good and be able to go to school. I want to not wonder what the next day is going to be like. I don’t want to worry about some sinister thing lurking around the corner to hit us in the head.

Too Many Things

Yesterday involved a lot of things. Too many things, which ended up overwhelming me.

These things included:

  • Cleaning up the bloody nose Jack had when he awoke. And then worrying if this was a sign of low platelets (it wasn’t).
  • Drawing blood to determine ANC (not related to the bloody nose) and running the vials to the lab.
  • Getting Jack out the door on time to make it to school (put your shoes on, take your meds, brush your teeth, do you need a jacket, don’t forget your backpack). It was dicey for a bit because he couldn’t put two words together and walked around like a drunk man.
  • Calling the vet to make an appointment for my cat who has a skin issue that just won’t go away, likely due to a thyroid problem.
  • Trying to remove the nail polish from Halloween and being left with blue-stained nails.
  • Calling the Department of Child Support Services to determine the status of my account, which has seen no activity since July. Apparently the DCSS has requested that the DMV suspend Jack’s dad’s driver’s license.
  • Notifying Jack’s dad and step-mom about the license suspension. In case they missed the memo. And worrying about the (almost for certain) blow-back that will likely occur.
  • Worrying about leaving the country (and Jack) in a couple of weeks.
  • Calling and leaving a message for Jack’s oncology case manager to ask about the results of the labs, which showed that the acidosis had gotten WORSE despite the changes in medication that happened two weeks ago. The case manager was not working today.
  • Contacting Jack’s pediatrician in an attempt to understand why Jack’s acidosis has gotten worse instead of better and find out next steps. Apparently the next step may be consulting with a nephrologist.
  • Letting the home tutor know we might not need him but, hey, it’s early in the week so ask us again in a day or two because Jack hasn’t made it to school more than two days in any given week over the last three months.
  • My day job, but from home.
  • Setting out the rest of Jack’s pills for the week and, then, ordering more.

That was all capped off by a full blown anxiety attack. ‘Cause this was all too much for one person to handle on any day and there will just be more tomorrow.

Suggestions for Psychological Struggles with Pills

About a year ago, at age 6, Jack suddenly developed an aversion to taking pills. He would either gag when he tried to swallow or he would be frozen with anxiety and unable to swallow at all. I was in a horrible state of panic, and it didn’t help that when I called the oncology clinic for help, I was told by our nurse case manager that he absolutely HAD to take his pills because every missed dose increased his risk of relapse.

Yeah, way to help.

The social worker was about as helpful – she recommended stronger discipline.

Um, lady! WTF! My kid is dealing with some massive fear and anxiety here and you are suggesting I discipine him for that??

Up until that point, Jack had taken his pills in applesauce or yogurt. He kept developing aversions to the foods he was taking the pills with, though. We tried peanut butter, as well, and that worked for a bit before it didn’t anymore. I tried crushing the pills and dissolving the pills in liquid – no dice.

We met with the clinic’s child life specialist who had a talk with Jack about why taking medications isn’t very much fun. Jack wasn’t very talkative, though. It stressed him out even more to discuss it. She was very empathetic but had no more success than anyone else. She quickly realized he couldn’t even practice taking pills because it was the THOUGHT that was getting to him, not the actual pills themselves.

Even though she wasn’t successful in helping, at least I felt like she understood our situation better than the other professionals we were working with. I felt a bit better because I knew I’d sought out help, even if it wasn’t ultimately all that helpful.

It got to the point where Jack was going to need an NG tube. We’d tried for hours to get his pills into him one night with no success. We were ALL in tears. We resigned ourselves to going in for the NG tube placement the next day and headed to bed. Thankfully, though, I tried one last bribe and it worked.

What we learned was that a combination of things would ensure the success of pill taking:

  • He had to take his pills in nutella – but with just enough to cover the pills up. No big globs!
  • We had to say that it was time for nutella, and ONLY nutella. “There’s nothing in this spoonful but nutella!” He considered it to be a fun joke.
  • Jack chose where in the house he wanted to be when this occurred – it couldn’t be in the place where he ate dinner or watched shows. He tried sitting in a chair and standing up and decided what worked best.
  • Bribery – I told him he could have any toy he wanted but he had to keep trying his very best to take the pills every day.

Also, Jack really had to be the one to make the decision to do this. Kids going through treatment for cancer (and other treatments for chronic illnesses) lack so much control about what is happening to them. So I had to hold the spoon but not push it into his mouth – he had to tell me he was ready and put his mouth around the spoon while I stood still. This was a way he could take back some of the control and feel less pressure.

Now that we’ve had more time under our belts with this, I’ve come up with some other ideas that might be useful if you’re dealing with this kind of (psychological) struggle.

  • Offer a distraction – it might be easier to take pills if there’s something else to focus on (the school nurse gave Jack a spiral bound notebook to draw in when it was time for him to take his afternoon dose), such as a favorite TV show to watch or book to read.
  • Have another parent or professional administer the pills – and stay out of the room while this happens. Your child may sense your stress and worry, so remove yourself from the equation.
  • Offer a comfort item during the process.
  • Remove other sources of stress and avoid trying to give pills at times of high fatigue. If your kid hates taking a bath, try not to line up a bath right before or after medication time and maybe take fewer baths. If homework is creating more stress and exhaustion, reduce the workload. Jack always had a more difficult time at the end of the day because he was more worn out.
  • Disguise the pills. It didn’t work for us, but it might for you. I know one mom who crushed the pills and put them into melted chocolate, which then became candy. You could also try a smoothie or milkshake – just make sure the ingredients won’t impact the medicine’s potency AND you have to ensure the whole serving is finished.
  • Again, bribery and/or rewards! This doesn’t have to be a toy – it can be an activity, money, or a piece of candy that is granted after the pill is taken. Instead of doing something because I’ve told him he has to, Jack feels like he is choosing to do it in order to get a reward. For instance, we have a list of chores that Jack can choose to do to earn tokens – those tokens can then be collected and traded in for things like movie rentals or gift cards for shopping on amazon (which are things he is particularly interested in).
  • Seek psychological help. Sometimes a psychologist can figure out something that will work based on your child’s emotional state and needs. Perhaps play therapy?

It took us a lot of tears and stress and phone calls and begging to get Jack to take pills regularly, but once we figured out what worked for him and stuck to it, things got a lot better. Chances are even if you can’t find a solution right now, your kid will outgrow some part of the problem and you can try again at a later date.

Hang in there. You can only do your best and no more!

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.

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