1 Week Old:
1 Year Old:
2 Years Old:
3 Years Old:
4 Years Old:
5 Years Old:
6 Years Old:
(almost) 7 Years Old:
1 Week Old:
1 Year Old:
2 Years Old:
3 Years Old:
4 Years Old:
5 Years Old:
6 Years Old:
(almost) 7 Years Old:
One of the hardest parts about this portion of the cancer journey is the lack of attainable milestones. There are three phases to Jack’s treatment regimen, and we’re in the third and longest portion – Maintenance. While Maintenance is supposed to be the least intense phase because the treatments are more spread out, they stretch out across two and a half years. Jack started Maintenance in October 2012, so our next milestone is…
March 15, 2015.
That’s a long way off. Right now it feels like the end of treatment will never come. It seems like we have an endless number of doctor appointments, medications, procedures, blood draws, and dressing changes ahead of us. And through March 2015 we’ll surely worry about fevers and infections and side effects and fatigue and keeping our jobs and paying bills.
Rather than focusing on the depressing difficulties ahead, we distract ourselves. One way to do that is to create other things to look forward to, which Jack has done through the Make-A-Wish Foundation. Last year he met with the Bay Area chapter of Make-A-Wish and submitted his wish to meet Lady Gaga (go check out his video!). We’ve been patiently waiting for his turn since.
Recently Lady Gaga had to cancel her tour due to her own health challenges. Not only are we sad to hear that she is having health problems, but we are bummed that the granting of Jack’s wish – a milestone we were looking forward to – will be delayed, as well. That wish means a lot to our whole family. It means hope and inspiration and excitement and happiness and light in the dark. It means some manner of relief, which is difficult to be found during a cancer battle no matter how many people offer support. I’m sure you can understand why we are a bit fixated on it.
With Jack’s wish being delayed and new waves of exhaustion settling upon us, we decided to distract and rally ourselves with a new goal: the East Bay Walk For Wishes. The Walk For Wishes is a 5k walk that raises money for the Make-a-Wish Foundation. The East Bay Area chapter hopes to raise enough funds to grant wishes to sixteen children – a total of $120,000.
Our team is called Jack’s Juggernauts and we are (at the moment) eleven people strong! Our team aims to raise $7,500, which is the average cost of ONE child’s wish. My personal goal is to get to $1500 and right now I’m only a little over $400 away from that. I know some very generous people!
Many of you have just finished your taxes and are either getting back refunds or bemoaning your tax bill. Either way – you can do yourself a favor for next year and get a tax deduction by donating to our walk. You don’t have to itemize for donations to count and, in many cases, your employer will match your donation.
If you would like to help us out in our efforts to rally our family and help out kids who are facing life-threatening medical conditions, please donate. Any amount helps.
So, it’s February. Barely so – it’s closing in on March quickly! And I will mostly look back on the first two months of 2013 and not remember what the hell I did with my time.
But! Jack got glasses a week or so ago. We found out he is very farsighted and so now he has a pair of glasses with very thick lenses. It bummed me out a bit – another thing for him to have to deal with, and the glasses hide his gorgeous long eyelashes. But his vision shouldn’t worsen with age (this is a genetic thing and not cancer-related) and he can now read more easily and quickly! And this should mean less headaches for him, as well, which I know he’ll appreciate.
The adjustment to having glasses has gone surprisingly smoothly. Jack doesn’t normally handle transitions well, but with the glasses he tends to forget he is even wearing them and I have to remove them at bedtime. His classmates chattered a lot about the change when Jack showed up at school, but as far as I know there haven’t been any problems with teasing.
Jack’s teacher told me recently that he has caught up academically with his classmates! She has been very impressed by and proud of him! This was before he got glasses, so I’m sure that he will continue improving with the aid of being able to see properly. He recently read his first 40- and 50-page books, too!
I’m still a bit mystified by Jack’s social interactions. On any given day he’ll say he doesn’t have any friends or that no one wants to play with him. Yet walking through school and seeing all the kids who say hi to him tells a different story! He even gets hugs sometimes! It also seems that, from what we can interpret from the few details Jack gives us, it’s not that kids don’t want to play with him but that they don’t want to play what HE wants to play OR they don’t play it the way he wants them to. I’m not sure how to help him be more assertive with his needs (it’s taken a ton of work just to get him to tell us when he’s not feeling well – he doesn’t want to upset us!) and also to be less rigid. I’m hoping he’ll get it figured out on his own.
Physically Jack is doing fine. Maintenance continues as normal, although we did have to add Tums to his regimen on the weeks he takes steroids. A 6-year-old with heartburn is a pity (and kinda scary because all he knows is that his “chest hurts;” I already had the worry about when his stomach hurts – kidneys? liver? just constipation?). He’s also had either the same cold or four different colds since before Christmas. But his ANC is good and his exams have been fine so I try to focus on that. Plus, he is definitely growing! The kid needs new clothes and shoes again.
It had seemed we were making progress on the self-flagellation but yesterday Jack got really frustrated with himself for going through several pairs of socks before finding comfortable ones and slammed his forehead against the arm of the couch. He said he didn’t have time to draw that lesson (we were running late for school). And unfortunately he wasn’t feeling well enough to go to therapy on Wednesday since he’d had chemo the day before, so we’ll have to wait until March to address that again with his therapist. Maybe in the mean time I’ll coat the walls and hard furniture with bubble wrap!
So that’s what’s going on with my little ewok dude lately. It’s fairly tame stuff and for that I am grateful!
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.
“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.
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!
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.
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.
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!
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:
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.
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!
You might also like
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:
Filled with chocolate candies and…
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!
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!