Choice Quotes From Jack

Some of my favorite quotes from Jack’s twitter account.

(Holding up Yogurt Drops and Wheat Things) “I feel up for a little fusion.”

Those are old school cool! They’ve been around since I was like 1 or 2.

Why is it so peaceful here? I want to be a hero but there’s no chance here!

In the sense that I have all the parts I need, I’m complete. But in the sense that I’m still growing to be a grown up, I’m not complete.

The bad thing about getting older is that things get harder.

Sometimes I eat more sophisticated chicken.

I feel like chicken filled with whipped cream instead of muscles.

You know why I’m like this – it’s because of the droids! (Just wrapped up a week of steROIDS.)

Being all amazing and things is not hard at all for me.

Maybe in the future, maybe in 20 years, we can learn to make magic happen.

I have three parts: good parts, bad parts, and dragon parts.

You can’t touch time. But a clock can!

Milk glues bones together in a tasty way.

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.

***

Halloween and the Alien Astronaut

Yesterday was Halloween and as any special needs parent knows, holidays can be totally unpredictable. I wasn’t sure Jack was going to make it to school; similarly to how other recent mornings have gone, he woke up slowly and complained of chest pain. But I just kept on hoping anyway, and he totally rallied!

Since Jack hadn’t been to school much lately, we only just found out on Wednesday about the dress up parade they were going to have Halloween morning. Jack’s dad was in charge of his costume and Trick or Treating this year, but they wouldn’t see each other until after school, so Jack had to improvise and come up with something for the parade – something that included no weapons or masks.

Of course, he chose something from Dr. Who.

He still has a toy chest full of costumes (from his daycare days when he could dress up every day) and luckily, the astronaut costume still fits (I don’t know how!). Jack decided he could wear that and be an astronaut like in Season Six of Dr. Who. Since he couldn’t wear a mask, he wanted face paint so he’d look like an “alien astronaut.”

He sketched out how he wanted his make up to look:

Self portrait by Jack

Self portrait by Jack

After clarifying that he didn’t just want to look like his usual self (“No, Mom, I want a white face with black around my eyes!”), I set to work. I have to say, it felt very strange to apply make up to my son. He did surprisingly well when I put eyeliner around his eyes, too!

spaceface

So serious…

We rushed out the door and got to school in time for Jack to join in the parade. I couldn’t find parking so I did something new – I pulled up to the drop-off curb and let Jack out on his own.

For the first time ever, I let Jack walk up the stairs by himself and I drove away without walking him to class!

It felt weird but Jack was totally fine (of course). *sob* Later in the evening David told me he was proud of Jack, but more proud of me!

I ended up heading back home after realizing the headache from the previous night had turned into a migraine, but I felt proud of myself and my boy. Then I started mentally kicking myself for not getting a picture or staying to watch the parade (thankfully, his other parents got pics of him later in the day) before deciding not to worry about it and going back to bed.

Jack ended up wearing two other costumes for Halloween. He was a “scary scarecrow” for Trick-or-Treating and then some sort of death metal musician with a red cloak. The astronaut was my favorite, though. Somehow that costume felt perfectly appropriate for the milestone of going off to class by himself!

One small step for Jack, one giant leap for mom (or something)…

alienastronaut

***

Hey, look! I’m participating in NaBloPoMo! You can, too!

On The Mend

Today is my first day back at work after two and a half weeks of being off to care for Jack. I’m not gonna lie – it’s hard to come back to work. It’s hard not to have the option to nap some time during the day. But it’s also nice to be doing something that has nothing to do with my son’s health.

I am really glad the last two and a half weeks are behind us! A mystery illness causing febrile neutropenia, a hospital stay, tests galore, so many medications on a very rigid schedule…and so much boredom. There are only so many movies to watch and so many crafts to work on. We’ve watched Seasons 5-7 of Dr. Who several times over and Jack has either drawn or built several incarnations of the TARDIS.

Jack’s ANC recovered on Friday, so he was able to get off of the antibiotic he’d been on for two weeks, but then he was diagnosed with a bacterial infection called c. diff. It’s something that attacks a lot of patients who’ve been on antibiotics for a long time because antibiotics strip the good bacteria from the gut. So Jack started a new medication for that, in addition to restarting his chemo. Thankfully the new medication is not one that has to be given on a strict schedule so I am no longer getting up at 5 and 6 am. Yay!

And tomorrow Jack gets to start school! WOOHOO!

I’m excited for this school year. He’s starting relatively on time (this week will be the first homework week, so he hasn’t misses much) and his best friend is in his class this year. I met and spoke with his teacher last week and she is really great! We’re all more accustomed to the school/work/medications routine than we were when he started 1st grade, as well, so I think it will be a smoother year. I hope.

Now that Jack’s ANC is back up, he’s back on maintenance levels of chemo, and he seems totally fine, I’m feeling much less worried about him. I’m so thankful he’s on the mend and things are getting back to normal!

Sensory Screening

It’s hard to believe that summer is coming to an end, although the inclement weather in San Francisco this week has been providing plenty of warning. Jack’s first day of school is two and a half weeks away! I’m looking forward to it, but I’m also nervous about the impending struggles over homework and clothing and getting to school on time. Hopefully after a few months of a more relaxed schedule, we’ll have more energy and patience to tackle the school year.

In preparation for that, we were able to get Jack screened for sensory issues at a pediatric therapy center near to his dad’s house recently. The OT found several areas where Jack was having trouble, recommended further testing (to determine if this was ‘disorder’ territory) and said he would definitely benefit from occupational therapy. We’ll need to do more thorough testing to determine how much help he will need, but we also need to talk with his oncologists to figure out which areas are likely going to be a losing battle during chemotherapy. Some of the bigger issues the OT noticed were with muscle tone and Jack’s body awareness (proprioception). Those have never been strong areas for him, but they are also areas that chemotherapy can have an impact – sometimes permanently.

In looking up the information on sensory issues, I also found this information on inconsistent responses to sensory stimuli. I’ve noticed that Jack can react differently to stimulus based on the day – one day his socks bother him, and the next those socks are fine and something else is the issue. I knew some of these issues were always present with Jack – I distinctly remember setting him down in the grass as a tot which resulted in him freaking out and bursting into tears when he tried to crawl because he hated the feeling of the grass so much – and as time has gone by with us dealing with cancer treatment, I noticed that during certain times in his treatment cycles he had more trouble than at other times. This sentence from the above-linked article explains perfectly what I was already starting to suspect:

Also, the more outside stresses a child has in his life – the demands of school, illness, lack of sleep, tension at home, hormonal fluctuations of adolescence, changes in any medications – the harder it will be for him to “buck up” and tolerate his sensory issues as well.

I’m glad to have this information and to have some sort of explanation for the issues we’ve experienced, even if it isn’t exactly good news. This gives us a bit more understanding of how to address (and hopefully avoid) problems in the future. I’m not sure if we should have sought more help earlier in his life or not. In the past these sensitivities didn’t really interfere with our life. It’s hard to say whether we would have been able to keep on living with the sensitivities while only making minor adjustments, if he would have grown out of some of these issues, or if things would have gotten worse even without cancer in the picture. In any case, we can only act upon the information we have now, I suppose.

So I plan to follow up with the school district and push for testing and an IEP (rather than just the 504 plan we have in place currently). I hope we can get services through the district because I have serious doubts about our ability to find time for outside help until the cancer treatments are done (March 2015!). Of course, if that is the only option we will go that way. I’m just hoping for the (slightly) easier route. I think we are deserving of that!

Not surprisingly, this is all a lot easier to process when we’re not in the middle of trying to find various articles of clothing that are tolerable enough to get Jack out of the door and into the classroom. Thank goodness for summer break!