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.

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.

***

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.

Just Write [108]: In Charge

He walked into the bedroom where I was laying alone in the dark, hiding. A mountain of wadded up tissue was on my nightstand and my phone was in my hand. New tears popped into my already puffy eyes, even though I’d already been crying for hours. How could I still have tears left?

“I know I’ve said this before, but you need to ask for help. You need to tell me what you need me to do.”

“I don’t want to be in charge of everything,” I mumbled. I was completely enveloped in self pity.

“You don’t have to be charge of everything,” he replied.

I thought ‘you’re wrong.’

You need to tell me what to do.

That right there means I’m in charge. I have to know what needs to be done and I have to delegate the things I can’t do.

I never wanted to manage another person. Long ago I recognized that counting on other people to do things in my stead is not something I excel at. My childhood didn’t prepare me for that – it prepared me to take care of things myself. And that continued beyond childhood – I’ve made my career as an administrative assistant – someone else’s right hand. I’m the one people depend on, not the other way around.

Of course, being a parent means I am managing someone, albeit in a different way. I am the ultimate authority in my house about what happens with my son. I chose that role and I accept it.

I am not the best boss, but I fulfill my commitment. I’ve helped my son learn and grow and even thrive (despite his illness and my own shortcomings).

But taking care of a special needs child demands more of me than I ever knew was possible. I am not looking to unload the responsibility or shirk my duty. It’s just that sometimes it is exhausting. Because regardless of how many parents Jack has, I am still in charge.

I am in charge because I know more about him and his medical condition than any of his other parents – by choice. I am in charge because the doctors look to me first for information. I am in charge because I have the job that supplies the insurance. I am in charge because I have primary custody – again, by choice.

I am in charge because, in so many instances, I am the ONLY person Jack lets be in charge of things related to him.

I make his doctor appointments. I sort his pills every week and refill his prescriptions. I call the clinic…over and over. I refresh the test results page and I calculate his ANC. I arrange for childcare or changes to his schedule with his dad and step-mom. I know which foods he eats and which he isn’t into anymore. I know when he’s breathing funny or he is on the brink of a meltdown. I’ve documented so much of his life – on paper and in my mind – and I am the default caregiver because of it.

I could ask for help with all of those things, but taking care of Jack is so ingrained in me that it doesn’t even occur to me to ask for help. Why would I? It’s MY JOB. I’m his mother.

No one can lighten that load – I can delegate every parenting-related task I have, and I will still feel the weight of each responsibility because I am in charge no matter what anyone says.

****

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