Almost A Year Later

This whole cancer journey started about a year ago now. I can hardly believe it. I think Jack started getting sick before we realized – it was harder to get him to school, to get him to do homework and participate in PE, and then a couple of days after Christmas he got sick. Suddenly he spiked a fever and was miserable. He threw up, which is rare. His cousin was here from Maryland and tackled whatever bug it was with no problem! But it seemed to hit Jack like a ton of bricks, which was unusual for him.

A little over a week later, he still seemed to be off. He was tired, he was achy – sometimes writhing on the couch in pain, and I noticed he was having dexterity problems when putting Legos together – something he’d been doing since he was two! We thought (hoped) it was anemia or even just growing pains, but on January 7th, 2012, it was confirmed that Jack had Leukemia.

I look back now and I can’t even believe that I held up in those first days. I was terrified. I had NO experience with cancer, no idea what to expect. I took ativan to deal with my panic attacks. I drank coffee constantly – the warm cup within my grip somehow comforting and centering. I worried and worried and worried. Just a week before I had been talking to my friend Becky and had said, “I would die if anything happened to Jack.” Those words haunted me.

I kept thinking – Jack is so good, so sweet, such a happy, creative, magical little boy. He shouldn’t have to go through this! What if it took away his spark? I was well aware of how lucky I was to have Jack in my life – he made my life infinitely better – and then I worried he would be taken away. He was TOO good. I was TOO lucky. It would all be snatched from me. Having such awesomeness in my life couldn’t last…

It was unreal. It felt like I was living in a nightmare. I hoped it was just a long, intricate nightmare. I hoped the doctors had made a mistake, that they were being overly cautious, that they had switched Jack’s blood sample with someone else’s by mistake or something. It even occurred to me at one point in my terrified, exhausted haze that maybe Jack’s pretending to be an alien wasn’t just his imagination! Maybe he had alien blood and those weren’t cancer cells! (Yeah, can you tell I needed sleep?)

It didn’t help AT ALL that Jack’s namesake – his grandpa Jack – had died of cancer. It was Melanoma and this was Leukemia, but still. How fair is THAT? My heart hurt for Jack’s dad’s family members.

Most of the year is still a blur to me. I’ve seen people count the number of hospital visits, the number of various treatments and procedures, the number of pills even! (Okay I just went and counted what Kaiser has in their website for past visit info – there were roughly 35 visits [usually 2-3 appointments each visit] in 2012. Twelve of those included lumbar punctures and/or spinal taps.) Parents will track dates that new meds are given, ANC counts, side effects of every treatment…I did that for maybe two months. At some point I realized that all of the info was Greek to me and I’d let the doctors and my gut tell me the rest. Thankfully, it worked out.

At first we had a “Beads of Courage” necklace, as well, but after nearly filling it up after just that week in the hospital, we abandoned it. Some patients love these religiously but it didn’t feel that inspiring to us – it felt more burdensome and Jack had so little interest in anything that reminded him of his cancer once we left the hospital.

Things are pretty routine now and a lot about Jack’s life is fairly normal. He takes a lot more pills than most kids, he gets weekly dressing changes, and he can’t play contact sports. He often doesn’t feel 100% but what kid does? Before cancer, there were colds every few weeks or so – at least there are fewer of those now!

I think the largest impact – and it’s large, indeed! – of a chronic, life-threatening illness like cancer is the constant reminder and worry. Even if everything goes right, things can still go wrong and there is no preparing. Even if the kid can participate in most normal life activities, we parents need to assess every situation anew and sort out any possible threats to our child’s health. There is no safe spot, no time when you know nothing can happen – you don’t even trust yourself most of the time but you trust others even less.

Even while he’s sleeping – especially, sometimes! – there is worry. There is worry that one of the fifty bajillion blood tests will come back with odd results (and there is worry when they DO come back with odd results and you have no idea what it means or the doctor says everything is fine but then why do the numbers look different??), and worry that the medication isn’t working well enough. There is worry over side effects (their presence or the lack!) or longterm issues, anxiety over the catheter site and whether it’s supposed to look like that and whether the tube will hold up all three and a half years, the niggling thought that you missed something in the the four times you swabbed the cap with alcohol or that one of these times you’ll forget to undo the clasp before trying to push Heparin and blow a hole in the tube…

And when there isn’t worry about my kid, there is worry about myself – my relationships, whether I’m talking about this all too much or not enough, my work performance, the fact that my credit card debt doesn’t seem to shrink, the lack of attention (and sometimes food) I’m giving my pets, the fact that I’ve spent so much energy worrying about so much of this stuff that I have so little left for something like a school shooting.

“I can’t worry about that,” I tell myself. I will break. Or maybe I already am broken? Shit, there’s another worry.

And, all things considered, Jack is doing great! So it feels like the worry is for nothing! But there isn’t a damned thing I can do about it. There is no way to take a break from all of this. I worry in my sleep.

I imagine that another year will go by and the worry will lessen. I’ll grow more accustomed to all of this, find new ways to adapt and cope. Maybe even one day the weight will be lifted completely! Then what will I do with myself?

I know this post is mostly about me and not so much to do with Jack and how he’s dealing with everything. There is not a whole lot I can say about his experience, to be honest. He refrains from talking about cancer for the most part. He has mentioned a few times that he wishes he didn’t have it and hopes I don’t get it, but mostly he goes about his days as if it doesn’t exist. Partly its because of his age – he really doesn’t have a concept of what COULD happen. He is mostly unaware of the worst case scenarios. And rather than anxiety, he seems to feel irritation depending on his desires at the time. If he is prevented from doing what he wants to do, he’ll become irritated about it instead of resentful or worry that he’ll never be able to do it, OR he’ll take the escapist route and make it into a story.

Jack handles a bit of chaos and disorder much better than he did a year ago, and seems more confident and willing to try new things. Part of that is aging, but part is likely the cancer experience. He was precocious before, but now he is frighteningly adult sometimes. He recently told me that a friend I had lost will live on in my plush ewok doll. He often tries to discipline himself at home and at school. He deals with anger and depression and fatigue, things I’d hoped he wouldn’t have to deal with for many years yet.

One thing I’m particularly proud of him for is his ability to assess how he is feeling and tell us whether he is up for certain activities. Sometimes he’s too tired to talk on the phone, sometimes he’s tired but wants to try anyway. Self-awareness is a good skill to have and it seems like he is developing it at a fairly young age.

All things considered, we are much the same as we were a year ago, albeit somewhat less carefree and a lot more appreciative of the little things. In some ways we are stronger (our pain thresholds are higher!) and in other ways we are weaker (it takes less to disturb our routine and sense of security). Best of all, we have our little family and hope for the future.

Getting Jack Back

“Mom, I’m starting to get used to myself in the mirror,” Jack told me recently. He further explained that he was feeling better about how he looks with short hair. I told him that’s great! He is a handsome kid no matter what his hair looks like and I’m very happy he can see it.

His appearance is worlds better than it was nine months ago. He’s put a few pounds on since he was first diagnosed (he’s gone from 42lbs to about 45) and his hair is growing back fairly quickly with mostly the same consistency and color as before he lost it. His eyes aren’t as sunken and the circles are there less frequently.

He runs, he climbs, he is mostly back to his old self. He has fewer aches and pains, more energy, and expresses less fear. This was readily apparent on our recent trip to the zoo with some neighbor boys – Jack challenged them to races and climbed a tree with them, too! We were there for four hours and he didn’t even say once that he was tired. *I* was the one who had to nap when we got home.

The Child Life Specialist mentioned that the fact that he is feeling so good is likely part of the reason Jack’s been having difficulty taking his medicines since maintenance began. He LOOKS healthy, he FEELS healthy, so it’s hard for him to feel motivated to take something that tastes terrible and doesn’t make him feel any better. Not to mention the fact that he’s just plain sick of being a cancer crusader – he’s gone back to school and just wants to be a regular kid.

We have a lot of cancer treatments to get through still – two years more – but I’m happy to see that we don’t have to wait that long to have our boy back. We missed him.

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! ;)


Birthday Shark Clubbing and UFOs

We had Jack’s birthday party on Saturday. I started baking his cake Friday night (it took WAY longer than it should have). Saturday morning I started on the frosting while David strung up the piñata and handed Jack a golf putter.

Now, word to the wise – it takes a WHILE for a scrawny six year old to get a piñata open. There is a reason these things are supposed to have a billion kids whacking at it! Jack had to take a break at one point because he got so tired from swinging the putter. While he took a break, David tampered with the shark a bit so that when Jack came back it wouldn’t be long before it starting spewing its insides.

shark pinata

Jack clubbing the shark

Jack loved it. He picked each thing up as it flew out of the piñata to marvel at it. This is another reason it took forever to get through that thing! I had stuffed all kinds of random stuff inside the night before, including leftover fortune cookies and fruit snacks. When the owl keychain I loaded in there flew out, Jack brought it to me immediately and said, “Mom, I think you should have this because you really like owls.” Aww!

I had some major troubles with Jack’s cake – everything was taking longer than it was supposed to, the caramel for the icing seized up the first time, and my buttercream freaked out and tried to turn into cottage cheese at one point. Luckily, I was able to fix it and and slap the UFO cake together. I’m pretty proud of how it came out and everyone else thought it was delicious! I added some monster cupcakes for the kiddies.

UFO Cake
monster cupcakes

I don’t think Jack even noticed that he didn’t have a big party with all of his friends there – he seems perfectly happy with the celebration and I think it was a great birthday party regardless of the size. Yay!

make a wish

Jack’s wish is to bring a dragon to life.

Six Years Ago Today

Jack’s birth was not an easy one. At 41.5 weeks, I was induced and it took 30 hours of contractions before real labor kicked in. Once there, it was another 9.5 hours until the kid was born. Until the very end, he refused to drop and hung out in my rib cage. He also did flips the entire time, so when he was finally born – purple – his umbilical cord was wrapped around his body three times. You can see his still-mottled coloring in this picture, which was taken after they gave him oxygen:

Can you believe that hair? That kid has the craziest amount of hair I’ve ever seen. He was born with sideburns! Even now, after six months of chemo, he’s hanging on to a bunch of hair still! He’s totally my fuzzy little ewok. (He was born up where they filmed the ewok scenes, you know!)

Jack was so aware right from the beginning. He often had a wrinkled forehead and looked so serious. He stared at me with those big, serious eyes early on:

Jack at 5 days old

He smiled and babbled early, too – he was *JACK* right from the beginning. It was easy to see that this little guy had a big personality just waiting to burst out.

Jack smiles at 5 weeks old

We had so many nicknames for him. Jackie. Jackazoid. Jackonaut. Jackington. Jackaroo. Bubba. Mister. They all fit, even today as he dresses up constantly and pretends to be a super hero or an alien or a sea creature.

I can’t believe he’s six. And yet, I feel like my life didn’t exist before he came along. He changed the state of things, that’s for sure. It’s because of him I’ve come so far in therapy. He’s made my life exponentially better and I don’t know what I would do without him.

Happy birthday, sweet boy!


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Jack’s Birthday Piñata

I wanted to do something special for Jack’s birthday. I love Jack’s birthday (mine, not so much!). And this year seems extra important, especially considering that most of the craptastic parts of his Leukemia treatment are behind us!

Jack has made two requests for his birthday. The first was that he wants a cake AND cupcakes (no problem – that’s an easily arranged request). The second was actually a wish he stated aloud:

“I wish I could have a piñata at my birthday but with only me hitting it!”

The thing is, Jack is currently neutropenic (immuno-compromised) and we can’t have a big party with a bunch of germ-factory kids hanging around. Instead we will have a small family BBQ and he’ll have two of his cousins to play with. It’s seems lame to me, but I know he’ll have fun anyway. And when his immune system (and our bank account) recovers, we’ll go rent that bounce house we promised him and invite all his friends over to play!

The piñata is Jack’s consolation prize. It’s fairly inexpensive and he’ll get to beat something with a bat and he’ll love it. But what to fill it with when he’s the only kid whacking it? His sweet teeth is almost non-existent since the chemo…

I went searching on Amazon (Prime shipping is a mom’s best friend!) and here’s what I came up with:

Shark piñata (he loves Scooby Doo and dragons too much to hit them with bats)

Filled with chocolate candies and…

Mini Plush Monsters

LED Finger Lights
Glow In the Dark Lizards

Monster Head Suckers

I plan to take a couple of each of these things and give them out to the kids at the party in treat bags, along with pairs of these awesome alien glasses:

I hope he likes everything. It incorporates many of his favorite things and won’t create a ton of clutter! The piñata also doubles as a birthday present ’cause I’m lazy like that.

I’m looking forward to being able to grant him this wish. He deserves it!

Off to Kindergarten

My baby went off to school today.  He is going to come back home this afternoon and then can I even refer to him as my baby anymore??  I don’t know.

Last night Jack picked out the clothes he would wear on his first day of school.  This morning I asked if he had any breakfast requests and he asked for pancakes.  I made banana chocolate chip pancakes for him (and for me).  His dad arrived at our house at 8:10 this morning and David, Joe, Jack, and I all walked to school together for the orientation (the school is two blocks away).

Orientation was…boring.  It droned on pretty long and Jack was bored (as was I).  I’m not sure if the staff actually intended to put the kids to sleep but they definitely were subdued by the time the announcements ended and the kindergartners headed to class.  We were told that while it used to be that kids just had to learn how to spell and write their name and count to 30 upon leaving kindergarten, the expectation now is that they are able to read and write sentences by the end of the academic year.  Now I’m feeling pretty freaking glad that we seemingly got a head start on that.  If he went in not knowing how to write or read a damned thing, I would be more worried.  Luckily he can read (he just doesn’t have the patience for sentences quite yet) and write pretty well.

Did you know kindergartners have homework?  Oh yes!  Jack will get homework Monday through Thursday.  Wowwee.

I didn’t cry and neither did Jack.  He did get nervous when he discovered that his “little white bunny” wasn’t in his backpack but he had notes from both me and Joe to remind him that we love him.  I made sure to let him know that this was everyone’s first day at school and they were all nervous, too.  That seemed to help.

Update this afternoon – Upon picking him up this afternoon Jack told David and I that his day was “wonderful…I can’t wait to go back tomorrow!”  Success!

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The next phase

My boy is 5 tomorrow.  Rather than shower him with more toys than he possibly needs, I thought it would be better to give him an experience.  So we’re waking up bright and early(ish) to take him to the amusement park in Vallejo called Discovery Kingdom.  He has alternately been excited at the prospect and worried about the rides.  I’m hoping he sees how fun the kiddie roller coasters are and goes for it once we’re there!

His dad and step-mom threw a birthday party this past Sunday in a park (pictures are here).  A bunch of kids came and everyone ran around being goofy.  Jack got a ton of “help” with opening birthday presents and was a very good sport about it.  He got a ton of awesome stuff and we were able to split up the ‘loot’ between our two households without trouble.

He is growing in leaps and bounds.  He is out of the T-sizes completely now.  He goes through shoes like nobody’s business (each pair lasts maybe 2 months) and it seems like he never stops eating (or talking).  That kid will pretty much eat anything.  I think his favorite food right now is pickled cabbage!

He can read and write so many words and sentences.  He has asked questions like, “why does elephant have a p in it?”  I was only slightly annoyed by a recent picture he drew because I was also proud that he spelled it all on his own (the yin yang is a product of seeing Kung Fu Panda not too long ago):

He knows a ton about Vikings and Jotuns, thanks to his dad.  He’s going to be quite the History buff in school, I’m thinking.

Jack loves aliens and “scary shows.”  Scooby Doo is his favorite, followed closely by Ben 10: Ultimate Alien.  He spends a ton of time drawing aliens and constructing Lego spaceships.  It doesn’t seem to matter that I suck with Legos – I just tell him it’s a space buggy or space glider and he totally buys it.

He is amazing with little kids.  He is the popular one in daycare and also the oldest.  His little friends gather around when he arrives in the morning to see what he’s brought with him and to show him anything they’ve brought.  It’s damned adorable!  Jack’s little cousin Sabrina was here this weekend and Jack was so good about showing her how to do various things (like putting toys back on the shelf in Target) – even when Sabrina wasn’t so much about listening.  It seems like he was a born leader and a born older brother figure.  That makes my heart squishy.

He seems to be more afraid of things lately.  He worries about monsters in the dark and asks about death.  I have been assured that this is fairly typical of a 5 year old.  Still, it hurts my heart when he cries for an hour because he’s afraid his friend Syndey is going to “stretch her arm into our house and steal [his] books.”  It’s heartbreaking and hilarious all at the same time.

I can’t believe I have a five year old.  Happy birthday, sweet boy.

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The Keys to the Kingdom

Jack can read.

This is CRAZY to me.  He’s not even 5 yet!  Actually he’s been able to read words for a few months as far as I can tell – it’s hard to say because he is a closet reader.  He is the type of kid who doesn’t like to show that he can do something until he can do it perfectly.  That’s how it went with potty training, too – he stopped peeing in his diaper at night by age 2 but didn’t decide to use the toilet until somewhere near age 4 (I honestly can’t recall) and then it was all in!  He had very few accidents once he decided he was a big boy.

So I’ve suspected for some time that he could read but it wasn’t until a few weeks ago that he was at his dad’s and officially read a book that he hadn’t read before.  He has been reading the backs of buses and is picking out episodes of Ben 10 (his ultimate favorite show) to watch from the Tivo by title.

He can also write his name, dad, mom, and this weekend I went into his room to find “THOAR!” on his magnedoodle.  (The kid loves exclamation points).  He signed his name on all of his Valentine’s treats back in February.  He draws letters randomly on all of his artwork.  He’s kind of obsessed.

I let Jack know that he has a super power now that he can read – he can figure out secrets that are written down and everything.  ;)   I can’t wait until HE is reading books to ME at bedtime!

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A little step

I did it.  I filled out the application for Jack to attend elementary school in Fall 2011.  I’ll swing by the SFUSD this week to turn it in and verify my identity and address.  After that we’ll get to sit back and wait to see whether Jack gets into any of the 10 requested schools.  We won’t know until March or so.  Jack will get a bit of sway when it comes to our #2 school because of where we live but since he has no siblings, is white, and speaks only English he is much further down on the list of students with priority.  With that said, we live in an area where half of our neighbors probably send their kids to private school and there is a huge portion that are not white, so Jack might just be the minority.  I really don’t know but we will find out.

In the mean time I am fighting to get Jack to daycare in the mornings.  He is increasingly resistant to going.  Today in particular he was not interested in going to daycare or going to his dad’s house afterward.  He said, “I just feel like staying home with you forever.”  I told him I know how he feels, that I don’t like going to work and would love to stay home, too.  In fact, I had nightmares about going to work last night!  Of course now he is going around saying he is having nightmares about going to daycare…oops.

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