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.

Our Little Dez

He already thinks poop is hilarious – he chuckles silently when we are surprised at the contents of his diaper.

He bats at the elephant toy on his bouncer but just glares at the monkey.

He prefers to look to the left.

In his 11 weeks of life, he has gained over 6lbs and is now 12lbs, 15oz.

He has kept up his ability to roll from tummy to back and is trying so hard to creep.

He thinks that baby in the mirror is pretty cute.

He is quite the conversationalist once he gets going.

He gives us lots of smiles while looking up at us under his eyelashes, just like Snow White’s Bashful.

He still has that new baby smell.

I don’t know how we ever lived without him.

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Kids Notes

I have had so little time to write. It sucks. I need to write. I am much happier when I have been writing.

That’s not to say that I haven’t been happy – I’ve been surprisingly free of baby blues and depression! But how long can I maintain good mental health without participating in something I know keeps me sane?

Anyhoo…here we go with a mad-dash post typed with one hand.

Notes on baby Dez

Dez is a very good baby thus far. Although he absolutely hates getting his diaper changed and wails every time. I think we owe our neighbors some wine for putting up with it. So far I’m not too sleep deprived, but I bet that will change when he wakes up to the world more. And when I go back to work (sob).

David gave Dez his first bottle last week. He took it just fine and then went back to nursing with no problems. Yay for Comotomo bottles!

I got my first smile out of the little guy yesterday when I stuck my tongue out at him. It was awesome! After 5 weeks of nothing but naps and nursing and diapers…finally some interaction!

I’ve been struggling with oversupply again. My body continues to think I should be feeding triplets. This means Dez is gaining weight like crazy and going through zillions of diapers. The cool part of oversupply is that I can pump 3.5 oz. in 5 minutes – on one side. There are lots of cons, though – green poop, gas, choking during letdown, more frequent nursing, so many diapers!!! I am managing better than last time since I know what I’m doing but it’s still frustrating. At least Dez is dealing with it much better than Jack did – maybe because it’s not quite as bad as last time.

At 9 days old, Desmond rolled from his tummy to his back…several times. And he has repeated that performance pretty much daily. He can also go from his back to his side…it’s only a matter of time before he can roll both ways. I fear the toddler years, which will likely come sooner than I would like!

It took a good 3 weeks for his umbilical stump to come off and the area still hasn’t healed so it will need to be treated with silver nitrite. The same thing happened with Jack. I don’t know what’s up with my kids’ belly buttons!

I’m slowly searching for a daycare provider to send Dez to when I return to work in December. It’s a stressful task, to say the least. I’m taking it slow so that I don’t go into a panic and decide to quit my job so that I don’t have to leave my precious baby with a stranger. I thought it’d be easier the second time around but nope! I hope we find a good one right off the bat so that we don’t have to go through everything we went through with finding good care for Jack.

Notes on Jack

Jack is a great big brother. He fetches all kinds of things for me and the baby and always tries to distract the baby during those torturous diaper changes. He’s been good at keeping himself busy when I can’t put the baby down. I’m so thankful we still have our reading and snuggle time together before he goes to sleep so that we can still connect.

He’s generally been in better health and made it to school most days this year. Just a bit over 5 months of treatment left!

We met with his new teacher and found out that he is behind where he should be for a third grader. The things the teacher has noticed are in line with what we’ve seen at home and are common learning problem areas for kids who’ve undergone chemotherapy. We asked his teacher to document anything she sees and we’re going to (again) seek an IEP evaluation – and this time we won’t back down. We’ll be in a better position to argue for the testing now that Jack has been going to school regularly and his teacher is actually noticing his difficulties.

He’s been struggling with his friendships at school. He is so upset when his best friend doesn’t want to play with him and says other kids don’t understand the imagination games he likes to play. I wish I knew how to help him. I had similar issues as a kid but I don’t remember being quite so upset by it. Jack is just so sensitive.

I’ve been very surprised that lately he’s talking more about cancer, too. He found a game in the app store that is all about destroying cancer cells and he loves it! He’s also been drawing blood cells and he found a plush cancer cell on amazon. It’s a little unnerving that he is suddenly so focused on it, but I also think it’s good that he is talking about it. Maybe therapy has helped?

 

Alright, I’d better post this before it self-destructs. More soon, I hope.

He’s Here

On September 2, 2014, at 12:43am, we welcomed our new baby Desmond to the world. He measured 19″ and 7 lbs. 1oz. He was born without a single push on my part!

We are madly in love. Jack met him on his first day of life and said, “This is one of the happiest times of my life!”

Our dog Lambert is channeling Lassie and thinks he should come to Dez’s rescue at the the littlest cry. Lambert even leads David to me when Desmond needs to nurse. We keep trying to tell the dog that we have it covered but he clearly doesn’t think we’re very good at this baby thing.

I’m hoping to get the birth story up soon! Stay tuned!

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:

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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!

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Jack, age 7 (July ’13)

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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.

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.

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!

Aural Update

Is that a word – aural? I’m not sure but it is amusing to me so I’m going with it.

In case you haven’t guessed (or you’re new here), this is in reference to my post Lions and Tigers and Auras, Oh My! I thought an update might be in order.

First, Jack spent a weekend with his dad and step-mom and during his time there, his step-mom asked him how long he’s been seeing colors around people. Jack’s answer was, “Since I got my new glasses.” And we all thought, AH HA!

I did some research and found out this is called chromatic aberration, or “color ghosting” around the edges of objects. It is much more common in polycarbonate lenses (which are generally what they give to children because they are more durable) that have stronger prescriptions. Some people don’t notice it, but Jack does. Apparently.

In addition to learning this valuable information, I met with Jack’s therapist and her supervisor – both to get my questions answered and get an update on Jack’s progress in therapy. We all agreed that Jack is an extra-empathetic and intuitive kid. We also agreed that he is in need of tools to help him learn how to distance himself from the emotions of those around him so that he doesn’t absorb them, which has caused him problems at school. He comes by this naturally – I deal with it, as well. This ‘ability’ has led me to refer to myself as a ‘mood sponge’ and it can be very difficult for me to differentiate between my own feelings and those of various highly emotional people I might spend time with and care about. It can be very confusing when I get depressed out of nowhere and have no clue as to why – and then it all becomes clear when a family member or friend that I’ve been around a lot admits they’ve been struggling with depression. Anyway, I haven’t done a great job of learning how to handle this, so it’s not something I can help Jack with. Jack’s therapist, however, can help him with that as part of their regular therapy.

Regarding the whole auras and Intuitive thing – the supervising therapist clarified that she had not been suggesting that Jack meet with an Intuitive – merely, it was a resource for me (and his other parents) if we wanted some additional guidance in understanding a highly empathetic child. None of that is part of the therapy he is getting from them; it’s just extra information that we can do with what we will. I expressed our general discomfort with that route and let both therapists know that we’d like to focus on the typical therapeutic methods of helping Jack to learn to put up boundaries, which they are more than happy to do. Whew.

I didn’t bother arguing that I don’t think Jack can actually see auras or explaining about the chromatic aberration thing. Essentially, the whys of his empathetic nature aren’t so important to me – I don’t think we can really know why he is the way he is. What is really important is that he learns how to utilize his empathy to his own benefit instead of being constantly exhausted by the emotions of others around him.

Hopefully I can learn that, too! It would sure make my life easier.

Last but not least, THANK YOU to everyone who provided input on my post. It was very helpful to hear a variety of perspectives on this subject. I really appreciate it. My friend Jana recommended I get the book The Highly Intuitive Child: A Guide to Understanding and Parenting Unusually Sensitive and Empathic Children (that’s an affiliate link). I’ve started reading through it and so far it’s RIGHT ON. So if you’ve noticed your own child seems extra sensitive to the world around him/her and you’re looking for some parenting tips, go check it out!