Three Years

Jack was diagnosed with Leukemia three years ago.

It’s been three years since I heard, “This is the best kind of cancer to have.”

Jack - first day of Kindergarten, before cancer.

Jack – first day of Kindergarten, before cancer.

Three years of worrying that he could die from a cold or infection or even just a side effect of treatment.

Three years of worrying what damage the same treatment that would cure him would cause. Heart damage? PTSD? Learning disabilities? More cancer?

He’s had 12 or so lumbar punctures in the last three years.
Plus Four surgeries – two Broviac catheters placed and one removed, and the placement of a PICC line.
Three infections – one likely viral, one due to a rare bacteria, one due to a common bacteria.
Four hospitalizations.
Countless toxic drugs, blood draws, dressing changes, line flushes, doctor appointments…

Jack has lived with monthly “Roid Rage,” as well as daily headaches, stomach aches, fatigue, trouble walking, numbness in his extremities, bone pain, skin sensitivity… His appearance has gone through drastic changes thanks to weight gain, weight loss, and hair loss. He’s dealt with acidosis and pseudotumor cerebri for much of the time. His personality has changed – I no longer describe him as carefree.

He has missed so much school in the last three years – half of kindergarten, at least a third each of first and second grade. We’ve had 504 and IEP meetings – and it’s only now, three years into this, that he is getting the proper assessments.

He has developed food aversions to the things we used to try to administer pills. He won’t touch applesauce or peanut butter anymore. He avoids yogurt and nutella.

It’s been over three years since he’s gone swimming. He will do anything to avoid an extra dressing change!

It’s been grueling for all of us. We are beyond tired, beyond shell shocked. We are different than we used to be. Cancer is a part of our life now. When treatment ends, it won’t go away.

Still, we are looking forward to the end of treatment – March 20, 2015. Maybe we will breathe more easily then.

Three years is too long to hold our breath.

Jack, age 8 - Christmas 2014

Jack, age 8 – Christmas 2014

I Don’t Wanna Grow Up

I still tuck Jack in at night. We usually read two books before bed to help him wind down and then I turn off the lights, lay down with him, and we chat for a few minutes. Last night we had to skip reading books because he hadn’t done his homework at the after-school program. Homework ended up eating up the evening and I tucked him in after 9pm.

He didn’t think he could fall asleep without reading books. He told me that they helped him with his fears. He is so scared and he doesn’t even know why. I think it probably has a lot to do with all of the VERY BIG THINGS he has to handle at such a young age, along with his great imagination. The world can be big and scary when there is no end to your imagination and you know that bad things can happen to good people.

Like cancer to a child.

I looked at him, his eyes wide with fear while he tried to hold back tears. I told him he would be okay, that we would protect him. Nothing could come into our house and get him – he has parents and a big dog to keep watch.

We can’t keep cancer away, though. He knows that. His fear persists.

I studied his face, looking at the nose so like mine and the eyes just like his dad’s. Suddenly he looked so grown up to me, even with the fear and the tears. “You are growing up so fast,” I murmured.

The tears burst from him and he exclaimed in a panic, “I don’t want to be grown up already!”

“Oh, honey, don’t worry! You’re still a kid! You can take all the time you want to grow up! I know you’re still young – you just look big to me, especially next to your little brother. Don’t worry, you’re not grown up.”

That seemed to calm him somewhat.

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Jack holding his little brother.

Then we talked about getting ready for Christmas – picking out our tree this weekend and maybe watching A Charlie Brown Christmas. He’s never seen it, so I told him about what a dope Charlie Brown is and how he picks the worst, saddest little tree. Jack laughed out loud at that. Ridiculous Charlie Brown!

Then he said, “Maybe he picked that tree because he knew no one else would pick it. He was being nice.”

“I think you’re right,” I told him, and we said goodnight.

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.