What A Birthday Boy Wants

Note: This is not a sponsored post; however, it does contain affiliate links just for funsies.

Summer birthdays are tough – as I’m sure many of you know. So many of Jack’s friends are out of town on vacation or at summer camp, so we decided to schedule his party for a week after his actual birthday. He was not happy about having so little planned for THE DAY but we tried my best to make it a good day. He got cinnamon rolls and chocolate chip pancakes for breakfast, had a playdate with one friend who was in town and another with his cousin Isha, and we made a trip to Toys R Us (where he picked out a large rubber tarantula and some test tube aliens). It seemed to be a pretty good day to me, but he felt it was lacking – I’m hoping it was just due to pulse of steroids he still had in his system from the prior week.

This Saturday afternoon his birthday party will take place and we have a lot of people coming (way more than I expected)! This year Jack expressed his desire to celebrate his birthday at Rockin’ Jump, a place filled with trampolines and a foam pit. Ordinarily I wouldn’t spend this kind of money on a birthday party, but since my due date is quickly approaching, I decided it would be best to have the party outside of our house. Less cleaning, you know! So Jack gets his wish and will be joined by 14 other kids all jumping to their heart’s content for two hours. And then we will send them all home filled with cake…

One of the ‘perks’ of living with cancer (doesn’t that sound wrong?!) is that Jack qualifies for a free specialty cake through a program called Icing Smiles. Icing Smiles is a collective of bakers who volunteer to provide free specialty birthday cakes for kids facing critical illnesses. Last year he got a dream cake that was shaped like an Ent from Lord of the Rings. It was AMAZING:

entcake

This year he won’t get the over-the-top “dream cake” but he will still get something special. A baker located in Fremont (Anything Cakes) is constructing a custom cake that will be shark- or Dr. Who-themed. Jack will be totally happy with either so we are leaving it up to the baker’s discretion. I can’t wait to see what is created! A cake seems like a simple thing to a lot of people but birthdays have a lot more meaning for us these days and it’s awesome that the day can be made extra-special with things like this.

So…what else does an 8-year-old boy like Jack want for his birthday? His interests are definitely unique – he doesn’t like the usual stuff like Pokemon, Yu-Gi-Oh, Transformers, or Minecraft (in fact, he loathes them). Instead he wants things like this:

A “carnivorous rock” plush that he designed and GypsyGarden Etsy shop brought to fruition:rockdrawing

rock plush

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A creepy cymbal-playing monkey:

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Sticky slugs:

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Toys that “eat” things/people, like Clayface:

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And, just to throw us off, the random cute/normalish thing – a plush koala:

 

He’s also happy to get books and Legos, of course. He can never have too many of those!

I’m hoping Jack’s birthday party this weekend goes well and he has nothing but fun! The steroids will be mostly out of his system so he should be in a better mood overall.

And by this time next year…he should be DONE with chemotherapy altogether and be able to have a cancer-free birthday. WOOT! I know that’s what he REALLY wants!

Jack is Eight!

I can hardly believe it, but my big boy is eight years old. And what a difference a year makes!

JackAge7

Jack, age 7 (July ’13)

JackAge8

Jack Age 8 (July ’14)

He is shedding his baby face a bit more every year. He is 3″ taller and 3lbs. heavier than he was a year ago, putting him at 4’1″ and 51 lbs. now. He is only 13″ shorter than me! He is so much stronger than he looks or knows – he throws his arms around me and nearly bowls me over every time.

He is reading chapter books on his own. His favorite books are the Bunnicula series of books, but he likes anything with talking animals and magic.

He is still a child, but he has moments where he shows so much wisdom. He was having a rather difficult time on his birthday because he was disappointed in one of his gifts (the one that was the largest but turned out to be something he was not interested in). He told me, “I know I’m overreacting. I know it’s just one present and shouldn’t be the only thing I focus on.”

He still loves art (drawing in particular – he doesn’t have the patience for coloring and he doesn’t like the lack of control with painting) and Dr. Who is his favorite thing in the world. He does take breaks from watching repeats of Dr. Who by checking out Teenage Mutant Ninja Turtles (shhh, don’t tell anyone – it’s a guilty pleasure for him), although he complains when he feels something in the show is inappropriate for kids.

Jack is overflowing with empathy. When I’m sick or tired, he brings me stuffed animals to snuggle with in bed and draws pictures for me. He tries to be helpful by feeding the dog and cats (I forget to reward him with tokens for it now and he never asks). When his cousin accompanied us to the toy store this past weekend, Jack asked if she could have a toy, too, so that she didn’t feel left out.

More and more, Jack is gaining independence. He helps himself to snacks out of the pantry and can pick out his own clothes. He spends time alone in his room with the door closed,  usually reading or drawing or playing with his legos or iPad. He recently took his first shower, which BLEW HIS MIND. He giggled at the feeling of the shower on his back and he said showering “feels like cuddling.” It sounds like he even prefers it to baths now.

There are still challenges, as there are at every age. He often seems caught between his childish urges and his maturing brain. He still loves his stuffed animals and sleeps with his plush menagerie (which most recently included a hedgehog, a giant tarantula, a tiny owl, the killer bunny from Monty Python, and a squirrel dressed as Darth Vader that we’ve named Darth Nut). He still struggles with a  fear of the dark and of various bugs (spiders, moths, mosquitoes). He is moody and has gotten in trouble more often lately – trying his hand at lying or outright defiance.

I am so proud of him. He’s smart, compassionate, loving, creative and funny. He is so very strong and brave, even though he doesn’t know it yet.

He is my amazing eight-year-old boy. I am looking forward to seeing what his future holds.

My Extraordinary Kid

What makes your kid extraordinary isn’t just the epic stuff. It’s the little things. The small moments that maybe only you see — and quietly celebrate every day. Jack and I have had our ups and downs as of late. He is growing and maturing, and yet still holding onto childhood as much as possible. He is nearly 8, and caught between two stages in his young life. And at the same time, he is fighting cancer with his every breath.

Sometimes it’s all too much for him.

notamused

Last week we had his friend over for a playdate. When it was time for the playdate to end, Jack wasn’t ready. He had a full on meltdown, declaring that it was unfair, that he didn’t want to be around me, and that no one understood how he felt. For the first time ever, he threatened to run away from home. When we dropped his friend off back home, Jack dashed out of the car and into his friend’s house – I had to pick him up and carry him back to the car (keep in mind I’m VERY pregnant).

On our way home, Jack said, “You probably don’t like me anymore.”

To which I replied, “Jack, of course I like you. I love you! We all say and do things we don’t mean sometimes. I will always love you, no matter what.”

Later on that evening he calmed down and apologized to me, unprompted. He then proposed a punishment for himself – perhaps he could have 3 hours of revoked iPad time. I told him I would think about it. Jack is generally so well behaved that I have very little experience with punishments!

All evening he hugged me spontaneously and repeatedly declared that he loved me. I told him I was so very glad that he was feeling better.

Experiences like these are hard on both of us, but they teach us a lot. Life is complicated and we are both still learning how to navigate it. Cancer has really amplified the everyday emotions we have to face, so we have to be stronger than ever and team up to face it together. I am constantly amazed by how Jack handles it all – he is truly extraordinary.

When you’re faced with the challenges that we are, it helps to have organizations out there like Stanford Children’s Health – the largest Bay Area healthcare provider with an exclusive focus on children and expectant women. Whether your visit is routine or rare, Stanford Children’s Health is committed to providing extraordinary care for healthier happy lives. In fact, Stanford Children’s Health and Lucile Packard Children’s Hospital Stanford has been the top-ranked children’s hospital in Northern California for over a decade.

Thanks to Stanford Children’s Health and their dedication to extraordinary care for extraordinary kids, I was able to create a slideshow celebrating my kiddo and all of his awesomeness. Check it out.

Your kid is extraordinary. Show them how much you enjoy every moment together by creating a special video of your own!

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

This Is How I Nest

I think it’s safe to say that I’m officially nesting. It looks a little different than I thought it would, though.

Rather than focusing on cleaning and organizing (although I’ve done a little off that, too), I’ve been working on getting projects completed. It started with creating a baby book using Project Life products (PL Baby Book example found here). That didn’t take long (since the baby isn’t here yet), so I moved onto hanging pictures on the walls.

We’ve lived in this house two years now as of last week and most of the walls were devoid of pictures even though I had a ton of stuff already framed. So I took care of that (pic 1 and pic 2).

Most recently I’ve been working on migrating photos from the albums that our dog destroyed when we first adopted him into new albums. I’m using Project Life for this, too – I had two photo albums full of pictures from my trip to England and France 10 years ago (10 years ago this month, even!), 8 pages worth of journaling, and a pack of souvenirs that I’d saved. I still have to transfer the more of the journaling into the book but I have all of the pictures and memorabilia set up in the album now. (David does not understand this at all – he thinks I’m spending way too much time putting together an album that I might take off the shelf and look at once a year or so. To him I say PFFFT.) I feel accomplished.

PL-europe

On the more traditional nesting front, this weekend we visited a furniture store that just opened up nearby and took care of getting one of the TOP things on my list of “I NEED this for the baby!” – a rocker recliner. Initially when I mentioned that I wanted one, David was totally opposed (due to the cost and the space it requires) but I ignored him because I’ve been through this before and I NEED a comfortable chair for rocking and nursing a newborn baby for hours on end! So he good-naturedly accompanied me to the furniture store and watched the World Cup while I negotiated with the salesman and made the purchase. Et voila:

chair

Now I’m focused on trying to find a place within a few hours of us to have a nice little getaway before the baby is born. So far this task has proved to be very challenging, as August in northern California means an influx of tourists and tons of local events (making everything much more expensive!). We don’t want to spend a ton of money but we really want to do SOMETHING before the baby is born (especially since our anniversary is 6 days after my due date). Hopefully we’ll stumble upon a deal or a quaint, little-known town to visit.

Or maybe a generous benefactor will come out of the woodwork and offer us something. WILL BLOG FOR VACATION! (Don’t worry, I’m not holding my breath on that one!)

Summer Tastes Like Freedom

dance-32193_640School’s out for the summer! YEAH!

This is big for us. Probably bigger (and better) than it is for most households. See, during the school year, Jack spends weekdays at our house and then all but one weekend a month with his dad (who lives an hour away). In the summer the schedule flips, so we will actually get to enjoy weekends and have leisure time with Jack on a regular basis! We’ll get to have play dates with his friends, too.

Not to mention that for the next two months our household will have a break from:

  • Homework
  • Packing lunches (with foods Jack hasn’t gotten sick of)
  • Strict bedtimes
  • Dragging Jack out of bed for school
  • Worrying about Jack going to bed on time
  • Being late or calling into work due to Jack feeling ill
  • The small annoyance of Jack’s teacher spelling his last name wrong regularly (it drives me NUTS)

David and I will definitely be enjoying the quiet time on weekdays, too. With our baby due at the end of August, this is going to be the last couple of months where we get to have stretches of time alone together without any kids to take care of. We will enjoy that little perk of shared custody while we can!

We have an exciting summer ahead of us for other reasons, as well. Jack’s 8th birthday is July 13. His Make-a-Wish is underway and he should have a completed TARDIS console in his room by the end of summer. In early August Jack is scheduled to go to Camp Okizu’s oncology summer camp where he’ll be away from his parents for a whole week – EEP. We are nervous about it and we’re not sure he’ll actually stay the whole week, but we figure we’ll give it a try. We think it will be good for him to get a little independence.

August will bring our baby and a new school year – Jack will start the 3rd grade. And then things will get messy (messier) again.

So for now, I’m going to try to enjoy a little bit of freedom!

Mental Illness, Mass Violence, And A Brick Wall

I’ve written about my brother Daniel previously here and here. Both of those posts are very much worth reading to understand our family’s story.

Here in the US it seems we are dealing with mass shootings on a regular basis now. It may or may not be due to an increase in the actual number of shootings, but for whatever reason we are becoming more aware of and focused on the problem. Some people blame misogyny, others blame gun laws, and still others place the blame on the media for sensationalizing the gunmen. Many (if not most) of us are at a complete loss as to what to do to address – and hopefully prevent – more violence.

By Francois Polito (Own work) [GFDL (http://www.gnu.org/copyleft/fdl.html) or CC-BY-SA-3.0 (http://creativecommons.org/licenses/by-sa/3.0)], via Wikimedia Commons

By Francois Polito (Own work) CC-BY-SA-3.0, via Wikimedia Commons

I don’t have a solution to the problem, unfortunately. I wish I did! But I hear people asking why these things happen and I do have some insight to offer in that regard – on the individuals who are violent, mentally ill, and left completely unchecked due to enormous flaws in our legal and mental health systems.

First, let me make a few things clear:

The diagnosis of a mental illness should not be a grounds for denying a person rights by itself.

The vast majority of us living with mental illness are not violent and present no danger to those around us.

The fact that a person suffers from a mental illness does not mean that he/she cannot make good decisions.

With that said, there are those out there that are both violent and mentally ill – and they are not receiving sufficient treatment. Further, there is no recourse for those around them – there is only brick wall after brick wall standing in the way of getting their loved ones help. Family and friends have to sit and watch while the illness continues to eat away at everything that was good about the person.

After each shooting, we are lambasted with details about the shooters and their families. In most of these cases, so many aspects are eerily familiar to me. The recent shooting near Santa Barbara by Elliot Rodger, which was mostly blamed on misogyny, struck a huge chord with me – the big similarity being that my brother has made many of the same statements as Rodger regarding women. Like the shooter, my brother believes that those around him are to blame for his lot in life. If he were to go on a murderous rampage that was aimed at women, a person might say that his misogyny was at the heart of it and they wouldn’t be completely off-base.

But, here is the thing – over the years as Daniel’s illness has gotten progressively worse, he has also made horrible, violent statements about actors, people of color, doctors – even babies. There is no guessing who his derision will be aimed at next. Any violent acts he commits could happen to occur while he is focused on any of these groups of people. This is how his mental illness works.

Remember: not all mental illness works that way and most who suffer from mental illness (or even the specific illness my brother suffers from) are NOT violent. Individuals are different and that means that the ways in which mental illness manifests in each person will be different, even if they have the same diagnosis.

My brother has been diagnosed with Schizoaffective Disorder and, in his case, he exhibits violent tendencies when he is at a low point (despite the fact that aggression is not listed as a symptom for the disorder – for him, it IS a symptom that his illness is flaring big time). His understanding of his life story differs from the generally accepted reality. His understanding of events and people differs from reality. His understanding of language and the meaning of words differs from what is agreed-upon by society. He lives in an alternate reality, one that is not truly representative of what is actually going on around him.

His behavior is not the result of societal attitudes – his behavior is due to the way his brain processes information. Because of this, he latches onto things that he hears and sees around him that fit into his own twisted view of the world – many of those things happen to deal with racism, sexism, conspiracies, etc. – anything having to do with extreme displays of emotion or radical ideas. If something doesn’t fit into his ideas about the world, he will either dismiss it completely or reframe it to fit into his own way of thinking.

Unlike my brother, most of these shooters haven’t been diagnosed with a mental illness, but that doesn’t mean they don’t suffer from mental illness, does it? In the case of Elliot Rodger, he had seen several therapists and his parents had called the police because they were concerned about his behavior. Having no prior knowledge of the weapons he had stored in his home or his many internet rants (which could have provided important information about his mental state), the police walked away when Rodger assured them that he wasn’t going to do anything violent.

We ask why we didn’t this coming, but even if we did – what could be done about it?

I can’t tell you how many specialists my brother has seen over the years who never diagnosed him with Schizoaffective Disorder. (He has diagnosed with ADD at one point as a child, which was clearly a drop-in-the-bucket of what was really going on.) Many of us who suffer with mental illness can tell you that RARELY does anyone hand over a piece of paper with a diagnosis on it, even if they are more than willing to write a prescription to treat symptoms – and it’s extremely common to be mis- or under-diagnosed. Each type of mental illness can manifest in so many different ways and symptoms can change drastically over time. In my brother’s case, the longer he goes untreated, the more his disease seems to progress and take him further from reality.

The presence of mental illness is one piece of the puzzle, but we have to ask whether there are adequate systems in place to address violent mental illness and prevent that violence from being directed outwardly and at the public.

Due to my family’s experience (and the stories of others who have shared their own struggles to get help for ill family members) I can say with 100% confidence that NO, our system is absolutely NOT set up to handle these issues in any sort of helpful manner. And there is very little that is being done about that fact, despite the growing concern over occurrences of public acts of mass violence.

My brother has talked again and again about inflicting violence on others – family, strangers, whatever. He has described in detail what he would do in an attempt to get away with it, stating that he would leave various body parts of his victims in random, separate trash cans. He has spoken positively of concentration camps. He is paranoid, delusional, and has hallucinations. He has made threats directly toward people, destroyed property, and, most recently, he has physically assaulted members of my family. He has published his rants all over the internet – just as Elliot Rodger did, and countless other perpetrators before him – and our family’s attempts to get help for him, to prevent his aggression from escalating violently and publicly, have gone nowhere.

The police have been called many times over the last 6 years or so, but only the most recent incident led to any criminal action – when he punched my mother in the eye, he was finally arrested. My mother moved to an undisclosed location and got an order of protection against her only son, as much as that killed her to do it. My brother was quickly released from jail and assigned a court date. In lieu of more jail time and felony charges, the court ordered him to participate in a “mental health program,” a program that doesn’t require that he take medication, be supervised by anyone, or be admitted for in-patient care. He simply has to attend counseling.

So, to recap, we are talking about an adult male with a diagnosed mental illness that he refuses to treat (or even acknowledge), numerous violent outbursts that have required police intervention, jail time, and restraining orders, plus detailed plans for other acts of violence against the public. Is counseling going to cut it?

My brother can easily obtain a gun or guns LEGALLY. After all, he has no felonies on his record and has never been held as an in-patient at a mental facility (my mother tried to have him admitted – they wouldn’t take him because they didn’t have enough beds, he didn’t appear out of control, and he is over 18 and didn’t want to be admitted) – which in California is grounds for denying the purchase of a gun. Apparently his therapist has insufficient evidence to show he is a threat toward anyone – his sense of self-preservation is still strong and he tends to not mention his violent thoughts to those with authority. My mother has done everything she could think of to give the therapist, the police, and the court the information they need to address my brother’s problems, but there is only so much she can do while also keeping herself safe from him.

My family members and I can tell you that my brother wouldn’t think twice about going on a shooting spree. He doesn’t really understand the emotions of others, and in fact seems to enjoy seeing emotions played out in extreme ways. It clearly doesn’t matter what his family members say, though – we’ve exhausted the system.

At this point it seems that his case is a lost cause and he is a ticking time bomb. And when it goes off, the police and even his therapists will probably say there was no warning or that the evidence was insufficient to do anything to prevent his acts of violence.

But clearly there is evidence…there is just no solution to this glaring problem.

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.

Google Shopping Express Pretty Much Rocks

Note: This is a sponsored blog post. In exchange for blogging about my experience with Google Shopping Express, I received a free trial membership and a credit to use the service. All opinions expressed are my own.

With the gazillion appointments we have to manage Jack’s health and this year’s addition of prenatal check ups for me (in addition to the regular life stuff like work), my time and energy have become even more limited as of late. Thankfully I live in an urban area where convenience is highly valued. And since Google is practically right in my backyard, Google Shopping Express recently launched in my area.

From Google:

Available throughout the Bay Area, from San Francisco to San Jose, Google Shopping Express is a same-day delivery service that allows you to conveniently shop from stores like Target, Raley’s, Nob Hill Foods, and Toy “R” Us in one online location. Whether you need a last minute pack of diapers to get through the weekend or a few forgotten ingredients to prepare dinner, Google Shopping Express can help fulfill any new parent’s shopping needs.

They have been focusing on parents but let me tell ya, this service is fantastic for any city dweller!

Last week both David and I were battling a horrible cold and Jack’s health started to decline, as well. We needed a few things that couldn’t be bought within a 10 minute drive of our home (even if we had the time and energy to make it to the store), so I looked to Google Shopping Express to help. I was able to place an order for a few things from a couple different stores and choose to have it delivered to my office in San Francisco. From Target, I picked alcohol prep pads, ZonePerfect Kidz Nutrition Bars, and a new screen protector for my iPhone. At the same time, I ordered a Snoogle Body Pillow from Babies R Us (side note: if you are pregnant, get a Snoogle! I have been sleeping SO MUCH BETTER!). Everything was delivered to my office in lightweight packaging within the 4-hour window I’d chosen. It took less than 10 minutes to place the order and to grab it from reception at work – a HUGE time saver over driving to the two different stores, locating the products in the store (and hoping they were in stock), waiting in line to make the purchase, and driving home again.

Maybe you love the whole shopping experience, but I DO NOT. I would much rather nap than go to the store.

The prices through Google Shopping Express are exactly what you would find in-store and you can input your membership number for the stores (like Toys R Us) in order to get your loyalty rewards when you order. If you’re buying commonly sold items like groceries, you can compare prices from different stores (Target vs. Whole Foods vs. Smart N Final vs. Costco – yes, they even have Costco!) so you don’t have to worry about paying more just for the convenience of having the items delivered and you can save a bit of money without trekking to a whole other store.

The whole experience made me SO HAPPY. The only thing that could have made it better would be if they delivered to my home in the East Bay – hopefully that option will be available in the future (especially by the time my new baby is born!).

So go, try it out! Google Shopping Express is currently offering new users $10 off the first order as well as 6 months of free, unlimited same-day delivery when you sign up for the free membership. You can order online or download the iOS or Google Play app.

If A Kid Falls Over And No One Is There to Hear It

Jack and I both stayed home yesterday because we’re fighting off some sort of nasty cold. He is fairly better than I am so far, which is ironic considering his suppressed immune system. In between looking mopey and blah, he was eating NON-STOP – just like being on steroids except he hasn’t taken steroids for a week and even then he didn’t eat like he did yesterday. Nothing was satisfying him.

Early in the evening as I was picking up the living room and dining room areas in preparation for a visit from Make-A-Wish, I heard some muffled noises coming from Jack’s bedroom where he was drawing. I called out to ask what was going on but didn’t get a response. A few seconds later, I heard more muffled noise and I asked Jack to use his words because I couldn’t hear him, even as I started walking down the hall toward his bedroom.

When I got there, he was starting to sit up from where it looked like he’d been laying his head against the bean bag chair next to him. Upon seeing the panicked look in his eyes and hearing his heavy breathing, I asked if he was okay. He told me he’d fallen over and couldn’t move his body. His face had landed right in the folds of the bean bag chair and he had felt like he was suffocating. And again, he couldn’t move to get himself more air.

His forehead was sweaty but he didn’t have a fever. Nothing was hurting him, but his heart was pounding with fear.

I called the pediatric oncologist on-call, who asked a few questions about any pains he might be having. She suggested maybe he was dehydrated and said we should have him drink more water and keep an eye on him and his temperature.

The rest of the night he seemed fine, although I did go in and check to make sure he was still breathing before I went to bed for the night. I ran his regularly scheduled labs this morning and the results aren’t terrible – he has an ANC of 792, so he’s not neutropenic, and the rest of his results don’t indicate that he needs a transfusion or anything.

Just…weird and a bit worrisome. My kid was suddenly, temporarily paralyzed and it landed him in a situation where he couldn’t breathe. I can’t even wrap my head around that.

Random Notes – aka CliffsBlog

After today, Jack has three lumbar punctures left before the end of treatment (March 2015). That makes me happy. I’m trying to focus on that and not the fact that yesterday, I noticed Jack has tiny scars on his lower back from all the lumbar punctures over the last couple of years.

I’m 24 weeks pregnant and I’ve gained 3 lbs total. I don’t know what to think about that! (When I was pregnant with Jack, I’d gained 20 lbs by this point.) The baby is clearly growing, though, so my doctor says it’s fine.

We haven’t decided on a name for the baby yet. I am (irrationally) worried this baby will never have a name. It’s not that there are a lack of names out there but nothing seems to be “the one.” It feels weird to not know what this baby’s name will be.

Make-a-Wish is coming out to our house on May 22nd to start the interior design phase of Jack’s room makeover! Yay!!!

So far, Jack is physically doing okay with the increase to his chemotherapy dose. Mentally, things aren’t so great and his anxiety has ramped up along with homework (math) difficulties. We found out at his appointment today that the chemotherapy dose is being increased yet again (that makes increases 3 weeks in a row) because he grew a bit since he was last in. And his ANC came back SUPER high, which really made me nervous at first but the nurse case manager said that it’s likely just a sign that he has finally gotten over whatever hit him so hard last August. So yay for that!

We are very much looking forward to the end of the school year in FIVE WEEKS.

Jack is wearing new shoes! He actually has two new pairs! He hasn’t put those freaking fur-lined boots on in over a week. Instead he’s trading off between Crocs and a pair of New Balance sandals. He wears them both with socks, but hey! I’ll take it!!!

This weekend we’re going to Camp Okizu (a free camp for families dealing with cancer). That will be a nice break for us and allow us some time to connect with other families in the cancer community. We’ve heard a lot about how people meet other families at the hospital/clinic but that hasn’t been the case for us. Generally the patients don’t mingle at Kaiser. We’re rarely in the waiting room with other families and the clinic booths are separated by curtains. So anyway, it’s nice to be able to chat with other families at camp who’re going through the same things as us.

Lastly, I had a wonderful Mother’s Day. David brought me fresh Starbucks, a donut, and made me breakfast in bed. He pulled some poppies from our backyard and put them in a vase for me, as well. I got to nap a bunch and then I took Jack to Build-a-Bear. We finished the day off by having Japanese delivery for dinner and watching Game of Thrones. I am cherishing the relaxing day because next year will likely be more chaotic with the baby in the house!