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!

Doing Everything And Nothing

How is it that a household can be so busy and yet not really doing anything of substance? Summer is almost gone and I can’t really point to anything that has happened in the last couple of months that would have made it go by so quickly. It’s just POOF! Gone!

Maybe it’s a bunch of little things that when added up create a sense of time being compressed. David has been volunteering for a LOT of overtime so nearly every weekend has him working at least some of the time (helping us pay off debt!). Jack and I have been spending a lot of time together on the weekends building legos, watching Dr. Who, and crafting. Other than that, there hasn’t been a lot of entertaining and our house is only marginally cleaner than it was at the beginning of the summer. Although we did move a few pieces of furniture around and bought some house plants.

At least some of the time has gone to catching up on all the television shows people have been raving about for the last year. We got caught up on Homeland (so good!), watched House of Cards (WOW!), and we’re almost done with Orange is the New Black (addictive!). I’ve zipped through the UK’s version of Being Human (loved it), season 1 of Scandal (meh, but the people are pretty), and the latest season of True Blood (not my favorite season). I’m now onto Luther and worried about running out of streaming shows to watch for free (we have Amazon Prime, HBO & Showtime, and are borrowing a friend’s Netflix)! 😛

Last week our dog had one of his canine teeth pulled and that was quite a production. I’ve never seen him as miserable as he was after that! He’s doing a lot better now but for the first day and a half after, he had no real interest in eating or drinking anything. He was put on three different pain killers and David and I have been taking turns working from home until he’s fit to go back to doggie daycare. He was dancing around like a goofball this morning when I was leaving the house, so I think he’s almost ready to go back.

Yesterday I submitted the five million forms it takes to get Jack registered for school. He starts next Tuesday and we won’t find out until Monday which teacher he will get. We don’t know any of the second grade teachers, so I’m not sure that it matters, but I think he would be more excited about starting back if he knew whether he’s in the same class as his best friend this year. So far he is not interested in going back to school. He has worried more than once that the next day might be a school day, so that has me nervous, as well. After such an easy-breezy summer, I worry we may have a tough transition on our hands. I’m trying not to focus on it too much until it happens, though. One more week to soak in the lack of schedule!

So that is my less-than-exciting update. I am looking forward to Type-A Parent Conference in a little over a month when I am rooming with my girl Jana again! Woohoo! Can’t wait to see my peeps!

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!

New Kid In School

Jack went to school today!!!

Let me rephrase that: for the first time in almost 10 months, Jack went to school today!!!

We drove to the school this morning and walked Jack to his new (first grade) classroom. Before the teacher had even spotted us, the kids all said, “Hiiiiii Jack!” and showed him where his desk was. Jack seemed to forget all about us. That boy does like attention…I was just happy to know that the teacher had prepared the kids for Jack’s arrival and that they were all so welcoming. It looked like he might be the “cool new kid.”

It was a short day – on Wednesdays they let out at noon – and it was made even shorter by a school walk-a-thon. Jack’s dad went to get him and apparently Jack was so enamored with his new friend Brianna (he has a friend already!!) that he didn’t want to leave – he decided he’d walk with the rest of the kids. Woohoo!

This has all cheered me up enormously. I wrote a long, depressing post yesterday that I kept in my drafts folder – I just couldn’t bring myself to post another depressing post following the recent ones. But I’m feeling better today – WE CAN DO THIS! We’re in Maintenance, baby!

And today I got a call from the Make-a-Wish program and it sounds like we’ll meet with them next week. They’ll bring an ice breaker gift for Jack and then interview him about his wish. Exciting!

I’m going to be cheerful if it kills me, dammit! 😉

 

Jack’s #ShineOn Journal

GapKids


This post is sponsored by GapKids. Check out all the fun Shine On activities at your nearest Gap store. For event dates and locations, visit Gap’s Facebook page and join the conversation on Twitter with hashtag #ShineOn.

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On Sunday Jack and I got up bright and early to drive down to The Gap in Los Gatos. As I mentioned previously, Gap is sponsoring some Back-To-School events using projects designed by craft blogger MerMag. The project of the day was a journal.

Jack got to pick out his cover cardstock, coordinating binding tape, a label for his name, and there were a variety of stickers and gem embellishments to choose from. He got right to work and didn’t stop upon completing the project itself – he decided he would start drawing inside of it, too! Then he told the project guides all about his sea monster.

The journal was a big hit. Jack’s been drawing since he was 2 years old, and he absolutely loves art, so I was happy to have this opportunity sent my way. This was a great way to get him thinking about school (he goes back in October!) in relation to something he already loves. He plans to write a story about the sea monster inside of the journal. I can’t wait to see what he comes up with.

If you want to attend one of Gap’s Shine On Saturdays event and live in a major metro area, check out the event locations listed on the Shine On Saturdays Facebook page. For those of you in California, there are a couple events this weekend (one in NorCal and one in SoCal) on August 25 from 10am-1pm in the following locations:

1139 S. Main St. @ Walnut Creek

Los Angeles: 2111 Glendale Galleria

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I was selected for this opportunity as a member of Clever Girls Collective, and the content and opinions expressed here are all my own.