End of Treatment!

Jack’s been off treatment for over a month! I’ve been terribly remiss in posting about it here. We took a few pictures, though. The first is his last day of chemotherapy in the clinic. The second marks the last day of oral chemotherapy altogether!

We’ve already seen a big difference in Jack. He is full of so much energy now! He has a huge (it seems to us, anyway) appetite! He’s waking up on his own a lot in the mornings rather than needing to be dragged out of bed. It’s AWESOME!

His Broviac catheter has been removed from his chest, as well. That is both good and bad. Good because we don’t have to go to the ER for a fever anymore and we don’t have to worry about dressing changes! Bad because it means now Jack needs to get blood draws with a needle from now on…

And he is deathly afraid of needles.

We tried to get labs drawn this week and it was a miserable failure. We are now looking at finding a therapist who specializes in EMDR (a therapy used for PTSD) in kids to deal with the trauma issues he has developed. We need to get this done soon and quickly! We can also try a finger prick approach, but I am not convinced that will work any better than a needle in the arm. Even if it does, he needs more therapy – his fears and nightmares (and NIGHT TERRORS) are still terrible.

So, that’s where we’re at with that. We are celebrating the end of treatment tomorrow by hosting a party in Tilden Park. Jack has come up with some cancer-themed games he wants to play and we’ll eat, drink, and toast to the fact that we survived the last 3+ years!!

Fuck cancer, y’all.

An Uncommon Mother’s Day (Review)

Note: This is a sponsored blog post. In exchange for blogging about my experience with UncommonGoods, I received a free product to review. All opinions expressed are my own.

Mother’s Day is coming!

I know you’re thinking, “Shut up, Crystal. It’s only April!”

BUT, Mother’s Day is coming fast – it’s on May 10th. That’s only 25 days away. And if you’re living a life that resembles mine in any way, shape, or form, then that feels like tomorrow. It is going to sneak right up on you if you don’t get on it now!

It can be a huge struggle to decide what the heck to buy your mom (or another special mom in your life) for Mother’s Day. She either has everything already or she is impossible to buy for or after a few decades of Mother’s Days, you’ve just plain run out of ideas. You want to get a gift for her anyway, though – even if it’s only a small token of the deep appreciation you feel for her.

Or maybe YOU are a mom and your kids or significant other are pushing you to tell them what you want. You want something unique and different but also useful because you have a hard time doing nice things for yourself. (Mmmm hmmm.)

Possibly it’s none of those and you just like to shop on the internet and find new things to buy.

Whatever the case, you need to check out Uncommon Goods. They have come up with a huge collection of gifts for Mother’s Day – you can browse by recipient or by occasion. The site excels at finding creative and unique items from individual sellers. They also strive to be environmentally conscious and socially aware. In their own words:

Founded in 1999 and headquartered in Brooklyn, New York, UncommonGoods is an privately-owned retailer that endeavors to feature unique designs and handcrafted gifts created in harmony with the environment and without harm to animals or people. We run all our operations out of the historic Brooklyn Army Terminal, including our warehouse where the lowest-paid seasonal worker starts at 50% above the minimum wage. We make it our mission to support and  provide a platform for artists and designers; in fact, half of what we sell is made by hand. Most of the products we carry are created right here in the USA, and about one-third of our entire collection incorporates recycled and/or upcycled materials. At the core of our company is a great respect for the integrity of the creative individual and the belief that it is our responsibility to use our business to impact the world in a positive way.

I’ve been a fan for years. They are my go-to site for housewarming gifts and for anyone who is tough to buy for. Many of the items end up on my Pinterest or just straight up in my house. I LOVE the fact that the company supports charities like RAINN and Women for Women International. They are just all kinds of good!

For this post, I’ve taken a look at the curated gift lists on UncommonGoods and pulled out a few of my own favorites  to create my handy-dandy Pinterest Board – Uncommon Mother’s Day.

Follow Ewokmama’s board Uncommon Mother’s Day on Pinterest.

UncommonGoods let me choose a gift of my own for Mother’s Day. It was so very hard to choose ONE thing I wanted, but I went with the set of 8 Bicycle Glasses. They are absolutely gorgeous – each has a brightly colored bicycle silhouette screen-printed in epoxy ink.

20905_bikesThey have a good weight to them, so they don’t feel too fragile OR too heavy in your hand – just sturdy and comfortable. And they are dishwasher safe, so they are still practical (satisfying the mom in me). I’ve already run them through the dishwasher a few times and I can attest that they came out looking as good as new!

Now, if you know me you know I do not exercise. At all. So a set of glasses with bicycles might seem like a strange choice, but bicycles have meaning in my house. When I met David almost seven years ago, he biked to work every day. Coincidentally, we worked down the street from one another, so he would ride by my office on his way to work, and I’d run downstairs to get a hug and kiss every morning. He also rode his bike over to my office at lunch so that we could picnic together under a tree we nicknamed Fred (Fred the Palm Tree). As an ode to our lovey-dovey early days, I’ve incorporated bicycles into our home decor in a few ways – we have a bicycle print I bought on Etsy hanging in our living room and our dishes have a bicycle chain pattern. Adding these bicycle glasses to the mix just made sense!

Now I just need these tall, customized tandem bike glasses to match. (Honey, are you reading this?)

So, look…I’m giving you a head start on picking out a gift for that special mom in your life for this upcoming Mother’s Day. Go forth and and find awesomeness at UncommonGoods.

And come back here to tell me what YOU are going to buy (or ask for) this Mother’s Day!

Disclosure: I was provided with the above-referenced product in order to provide my review but have received no compensation for this post. For more information on my reviews, please see my disclosure page and my summary of sponsored content.

To Simpler Days!

This year is trying to get the best of me.

My grandfather has been hospitalized several times and nearly died due to advanced liver disease. At one point he was in a coma and then he was awake and started planning his memorial…then one day he got up, got dressed, and decided since he hadn’t died yet he wanted to go home. We are all shocked as hell that he is doing relatively well now! I have no idea how long that will last, though.

During one of his hospital stays, things got even crazier when my grandmother had a heart attack, coded, and was life flighted to the same hospital my grandfather was at. A stent was placed and she was released a few days later. She looked amazing, all things considered, when I finally made it up to see her and my grandfather.

While those things were happening, we were getting Jack checked out for a fever in the first of three ER visits. That fever went away after the requisite two doses of antibiotics and nothing materialized from it, thankfully.

Not too long after, though, he had an allergic reaction to a breathing treatment he’s been getting for over a year. We marched straight from the Pulmonary department down to the ER and he couldn’t wear a mask because he couldn’t breathe…he recovered before a doctor saw him, though. (He won’t be on those breathing treatments going forward…)

A couple days after that incident Jack started developing a cold – probably something he caught in the freaking ER! He’s been battling it since and a week ago we ended up back in the ER again due to another fever. It’s been over a week now and the fever doesn’t want to let go, although it’s slowly losing its intensity. Jack has been out of school all week (right when we got his IEP in place, too!).

Meanwhile, the company where I’ve worked for the last 7.5 years is being acquired. My position is definitely one of the ones that will go away, but I don’t know exactly when (maybe May?). In the mean time I’m still working when I’m not home with a sick kid. We will be fine, by the way, but it’s still a big change that I have no real control over.

Tomorrow morning I’m taking Dez to see a pediatric neurosurgeon to assess if there’s anything we need to do about his plagiocephaly (probably nothing, but maybe a helmet, unless the universe has something else in store for us).

Also, David is taking a couple of college classes and we refinanced the house and Jack is Boy of the Year for the Leukemia & Lymphoma Society and the end of treatment is this week (!)…

So. I don’t even know what day it is anymore. I’m just chugging along and trying to keep my head above water. I’m looking forward to the end of Jack’s cancer treatment and life getting just a smidge simpler.

Please, let it get simpler.

IEPs Are A Full Time Job

We got the results from the school’s academic and psychological assessments of Jack on Wednesday. It’s 18 pages of assessment results that seem to require a degree in childhood education to understand. I’ve read and re-read the information and googled  my little heart out, but it’s still not clear what it all means.

On the academic assessment, the only issue that showed up was “math fluency” where he rated low average, and a slightly low score (but still considered average) in oral reading comprehension.

For the psycheducational assessments, he’s all over the board. Scores range from ‘borderline’ or ‘at risk’ on the low end to ‘superior’ or ‘above expected level.’ Jack hits every level in some area, which I think is what prompted this note:

“Jack’s unique set of thinking and reasoning abilities make his [cognitive functioning assessment scores] difficult to interpret.”

That is great! And yet…not-so-great. I love that my kid is unique, but being unique makes it quite difficult to identify how to help him be successful in school.

There are many notes throughout the pages of results that state “attention fluctuated” or “drifted off.” This is uneducated speculation on my part, but I’m guessing this is leading to an ADD diagnosis. (He was assessed for this through Kaiser recently, as well, but we don’t have the results back yet. In talking to his dad about the information and going through the process, I think we both feel Jack is likely to be diagnosed with ADD – just without the hyperactive part.)

One thing in the assessment results that stuck out was: “Jack exhibits a processing disorder in the area of attention that is affecting his classroom performance.”

From what I understand from the document and some googling, “slow processing” is a THING but it may or may not be considered a learning disorder (I think that depends on each district’s interpretation). And then, because of the part that says “in the area of attention,” it’s unclear whether this is just a result of something like ADD or if there is something else going on, too.

In any case, the assessments are helping with focusing on areas where Jack needs some help, either through accommodations (like more time to complete tasks) or some sort of specialized education. Naturally, most of what is described is not news to us at all, but it’s helpful to see where Jack is NOT having problems so that we can identify what the likely issues are that need to be addressed.

I guess I’m learning that IEP assessments are not cut and dry – which is why, I guess, there is nothing in these documents that say “your child has a learning disability” or “he qualifies for special education services.”

So, the following things were identified and may represent the source behind the low math and oral reading comprehension scores:

Processing Speed Score (WISC IV): Borderline (lowest score)
Narrative Memory (NEPSY II): Borderline (second lowest score)

Behavioral Issues (based on the Behavioral Assessment Scale for Children 2):

Internalizing Problems – Clinically Significant
Attention Problems – At Risk
School Problems – At Risk
Behavioral Symptoms – At Risk & Clinically Significant

We have a meeting with the IEP team next week to go over what all of this means specifically for Jack. Until then, I will continue to google my little heart out to try to wrap my head around all of this. In addition, I was able to get in touch with a case manager from Kaiser’s Psych department who will attend the meeting with us and be an advocate for Jack. Thank goodness!

I am hopeful that many of these issues will fade away as the chemo leaves Jack’s body; however, it’s good to be prepared in case they don’t. And, of course, there are late effects that can pop up long after treatment is over, as well. Sigh.

For those of you who have IEPs for your children, what resources do you use to prepare for these meetings and help your child navigate areas of weakness? I would LOVE tips!

Let’s Talk About Measles

There is an outbreak in the US. And it’s in California. And, more specifically, measles are in the county I live in. Patients have been treated for measles at the hospital where Jack receives chemotherapy treatment, even.

I’ve been really good about not freaking out, even though I have every right to freak out. I have no explanation for why I am not coming completely unhinged as the news reports more and more measles cases every day.

Both of my kids are in danger. Desmond, at 5 months, is too young for the MMR vaccine and chemotherapy has wiped out Jack’s immune system – including many, if not all, of the immunities he used to have. Jack attends public school and Dez goes to daycare. Jack won’t be able to get the live virus vaccines (MMR & Chickenpox) until a year post-treatment – so, March 2016. Dez will receive his immunizations after his first birthday in September (at least, I think that’s the case – Jack’s health status may delay that!).

Until then, it feels like my kids are sitting ducks.

I know there is a debate right now about keeping unvaccinated (by choice) kids out of schools. I am not convinced we can require everyone to vaccinate, but frankly, I am not arguing against making it mandatory to attend public school – it would certainly make me feel better to know that Jack was that much more protected against a nasty disease that could kill him while going about normal life.

At the same time, I can see the case being made that immuno-suppressed kids be kept out of school, too. I mean, the measles could kill Jack. So why wouldn’t I sequester him?

How can I do that, though? How can I take more away from Jack? He has missed out on so much over the last three years. He has fought so hard to beat cancer and to live as normal a life as possible. He missed half of kindergarten and first grade and so many other days of school, and it has had an impact on his educational performance, as well as his self-esteem. I don’t want to take more away from him!

Further, he’s in danger at places besides school. When I took him to the oncology clinic a couple of weeks ago, we were advised to put a mask on him while in the elevator because there were measles patients being treated at that hospital.

It hadn’t occurred to me that he would be in danger at the oncology office, of all places! And, COME ON! It’s 2015! Measles has no place being on the top 10 list of things I worry about!

In any case, have you ever tried to keep a mask on an 8-year-old? It’s near impossible for longer than 20-30 minutes. And what about a drooling, grabby 5-month-old? That’s just plain crazy-making! (It’s a fun idea for a party game, though.)

So, what I’m saying is…I’m relying pretty heavily on those around me to keep themselves – and us – safe. I’m relying on herd immunity to protect my kids from vaccine-preventable disease because I am powerless at this point.

And, unfortunately, there are many in my community that don’t even think of my kids when they refuse vaccinations. Instead, they think measles is not a big threat to them. They think a vaccine is more dangerous than the disease itself.

All I can think is…is this real life?

Calm and Clean: Little Twig Review

When you wait eight years between kids, it’s likely you’ll be starting over again with all the STUFF. I had saved very little of Jack’s baby stuff – as I wasn’t sure that I would ever have another child – and my head was out of the baby game for a long, long time. So when I found out I was pregnant with Dez, I got to work learning about all the new things that have been invented since I’d first become a mother.

For those of you who have also been out of the baby game for a while, let me give you a little tip. Babies need even MORE stuff than they did eight years ago.

Or so they say.

In order to prepare, I attended MommyCon when it came to San Francisco last year, as well as a “baby shower” hosted by The Baby Ladies when I went to BlogHer, and an anniversary brunch hosted by Avent. Am I an overachiever, or what?) I learned about the newest bottles and breast pumps and nifty play yards and breastfeeding pillows and and and…

I learned a lot. It was pretty overwhelming, to be honest, even though I’d been through it before.

And then there is a whole other learning curve once the baby actually arrives. You then learn which products your kid will and will not tolerate. For instance, even though Jack was often lulled into a sound slumber with the vibrations of his bouncer, it was not so with Desmond – Dez got completely PISSED if we turned the vibrations on while he was awake. We learned to bounce Dez to sleep and then turn the vibrations on a few seconds after his eyelids closed. Dave got particularly good at it!

Something that Jack and Dez actually have in common is sensitive skin. They are prone to getting pink and rashy and dried out if bathed too often or with the wrong kind of soap or if you rub them the wrong way. Surprisingly, Johnson & Johnson Baby Wash was terrible for Jack, but so was the more natural California Baby. We went through quite a few products looking for a good solution back in the day.

Unfortunately, I don’t remember what we liked best. And half the products we tried aren’t around anymore. And there is no guarantee that Dez would tolerate the same products anyway!

I was excited when Little Twig reached out to me and offered to send their products for us to try out. I received their Calming Lavender Baby Wash, which has lavender and chamomile, so not only does it smell great but it has relaxing properties that make it perfect for a bath before bed. The baby wash is pH-balanced for sensitive skin, and I’ve used it several times now on Dez and his skin stays perfectly baby-soft and clear. Woot!

LTBabyWashI also got a sample of the matching Calming Lavender Baby Lotion, which has the addition of lemon to it and smells absolutely heavenly! It’s a lightweight moisturizer that rubs in well and doesn’t leave the skin feeling oily. I tested it separately from the baby wash to be extra safe and Desmond’s skin was perfectly happy with it.

If you aren’t into lavender, Little Twig offers “Happy Tangerine” scent as well as an unscented, extra-mild line of baby skin care products for those that are even more sensitive than my kids. All of their products boast the following:

  • Safe for the entire family
  • Comprised of the most effective organic and botanical ingredients in a simple recipe for pure and gentle personal care
  • Completely free of phthalates, sulfates, parabens, synthetic fragrances, nuts, soy or wheat
  • pH-balanced and ideal for sensitive skin
  • Pediatrician-tested

If you want to try the Little Twig products out before investing into full size products, they offer travel size packs of their products that would be perfect! There are some adorable gift sets for the new parents in your life, too. There are babies coming every which way this year, it seems!

Does your baby have sensitive skin? Have you tried Little Twig?

Disclosure: I was provided with samples of Little Twig products in order to write this review; however, all opinions are my own. Please see my Disclosures page for more information on my sponsored content.

New Baby, Second Time Around

I saw a post on Facebook recently that said something to the effect of, “Second kid, don’t be bummed you don’t have a baby book. Your parents enjoyed your babyhood more than your older sibling’s.”

I’m finding that to be very true!

I used to be a diehard baby book person. I kind of still am, at least in my head. I spent so much time during this pregnancy getting Desmond’s baby book all set up using Project Life, which is made up of cards that you just fill in with the details. I’ve got ultrasound photos and pictures of my shower and a few other notes in there.

But then…I haven’t filled anything else out in months. I just can’t get motivated to do it – I’m too busy living in the moment.

I am enjoying Desmond’s babyhood a lot more than I enjoyed Jack’s. I don’t doubt myself like I did with Jack. I am not dealing with Postpartum Depression or a flare of PTSD. I’m in a better marriage and we’re in a better financial position.

I cannot express how glad I am that I’ll never have to be a first-time mom again!

This time around, I get to stop and smell the flowers. I sit with Dez in the rocking chair and feel his weight in my arms, his head on my shoulder. I snuggle him close, smelling that baby smell, and kiss his soft, chubby cheek. I sing to him – he can’t tell me yet that I’m no good at it! – and have little chats and encourage him to keep trying to crawl (even while hoping he will slow down just a bit).

In general, there is less rushing about this time around – I know a diaper change doesn’t need to happen RIGHT THIS SECOND and it’s okay if the baby fusses a bit while I use the bathroom.

I know that a poor night of sleep is no indication of what the next night’s sleep will be like, so I can reassure myself that I’ll sleep eventually. I know anything can happen, but I also know chances are that we’ll all get through it just fine. I know the challenges make us smarter and stronger and better.

Desmond is a delightful baby. Jack was a delightful baby, too. The biggest difference in this equation is me! I’ve learned so much from these two amazing boys of mine – so much that I can’t even begin to put into a baby book.

Save the Date with Minted

Note: This post is sponsored by Minted.

End of treatment is approaching for Jack and we have our eyes on the prize. We’re working on planning a few things in honor of this long, hard journey coming to an end, including a party to celebrate! We’ve have a few talks with Jack about it and so far he knows he wants to eat chicken on a skewer, mashed potatoes, and apple pie.

We’re a little food focused in this family.

He has a vision for making monsters that travel around on little motorized wheels, as well. I am not very mechanically inclined, so I’m going to leave that up to David to figure out! (Tag – you’re it, David!)

I get to work on the menu and invitations, mainly because I’m the mom and I didn’t ask for other volunteers.

This might come as a surprise to the other tech-savvy bloggers out there, but I’m a little bit old school and I LOVE paper. When I heard about the new Save the Dates at Minted, I got super excited. I already have some of their Mommy Calling Cards and the quality of the cardstock and printing can’t be beat; I get compliments on them all the time. So I hopped on over to their site to find something just right for Jack’s End of Treatment Party.

The problem is there are too many awesome choices!

Should we go with a British theme (for the Dr. Who lover)?

 LondonSaveTheDate

Or maybe something that showcases the sheer elation we feel to be DONE?

YesSaveTheDate

Or how about something with a photo to show off that handsome face?

PhotoSaveTheDateLuckily I get to play around on the site and personalize the different versions to help me make this decision. I may have to order a few different designs, though…

Disclosure: I received compensation from Minted in exchange for this post, but the content and opinions expressed here are my own. Please see my Disclosures page for more information on my sponsored content.

So Many Appointments

Jack has so many appointments. ALL THE TIME. Chemotherapy is only part of cancer treatment – there are a lot of extras that come along with it. Bonuses, if you will. (Ha!)

This is a snapshot of Jack’s January appointments – minus the things I’ve pushed off into next month, like the one that checks that his spinal fluid pressure isn’t damaging his optic nerve or the echocardiogram to measure organ damage from 3 years of chemo. It also doesn’t include the learning and psychological assessments he’s had at school this month.

January 2 – Ultrasound to check for damage to veins from Broviac catheter (looks good! whew!)

January 9 – Therapy

January 12 – Pediatrician due to dizziness, fatigue, headaches, nausea (inconclusive!)

January 15 – Lab draw (to hopefully explain dizziness, fatigue, headaches, nausea)

January 16 – Breathing treatment

January 20 – Lumbar puncture, oncologist exam, chemotherapy infusion

January 21 – Eye exam

January 22 – Dental cleaning (if his platelets and white blood cell counts are high enough)

January 23 – Therapy

January 27 – ADHD Assessment

As you can see, the longest stretch we’ve gone without making a trip to Kaiser was 7 days. BUT! Add on Desmond’s well-child check (January 5) and that stretch disappears.

I think we might spend more time at Kaiser than at home.

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