Moms In Training

Running is all the rage right now. I see you all with your FitBit and RunKeeper status updates and I envy your motivation! I was a certified couch potato long before becoming a parent, and now it’s that much worse. Who has time to exercise between laundry and meals and playdates – not to mention the scads of doctor appointments now that Jack is in treatment for cancer?! Sometimes I can hardly get myself motivated to walk the block from work to Starbucks!

But there is something that has motivated me to get out and walk: a good cause! Especially for others in Jack’s situation – those dealing with life-threatening illnesses like cancer. This is why, for the second year in a row, I’m participating in the Make-a-Wish Foundation’s Walk For Wishes. Getting out of the house and walking with others who have a similar goal in mind is an amazing feeling. I can’t recommend it enough!

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Me, prepped for a fundraising 5k!

Another wonderful organization – The Leukemia & Lymphoma Society – recently sent me information on a new program they are launching. This program is tailored to moms like me – moms who want to do some good in the world while meeting other moms and doing something healthy…moms who might not be in shape but would love to participate in a 5k for a GREAT cause. Moms In Training is a flexible nine-week program that gets moms together on Saturday mornings to prepare to walk or run a 5K. And for a little extra motivation, participants can dedicate their walk to someone special, as my friend Beth did for Jack two years ago, in order to raise money for blood cancer research.

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Jack wearing his Team in Training shirt.

Moms in Training is all over the San Francisco Bay Area, with Saturday morning workouts in San Francisco, the East Bay, the North Bay, the Peninsula, the South Bay, and even down in Santa Cruz. The final event – the 5K – will take place June 22nd in Alameda, CA. Those who want to participate pay a $50 registration fee and commit to raising just $500 in exchange for amazing support and coaching from the LLS.

mom-and-kids

(c) LLS

If you aren’t located in the Bay Area, don’t fret – the New York City, Boston, Philadelphia, Atlanta, Chicago, Dallas, Seattle, and Washington DC chapters also offer the Moms in Training program!

To participate in this program, sign up by April 12th! And if you sign up, please let me know so I can help spread the word about your efforts to raise money for blood cancers while doing something healthy for yourself!

Jack will once again be an honoree, but this time for a Moms In Training team here in the Bay Area. WOO HOO! Check back for a link to their fundraising page soon!

NOTE: This is not a sponsored post and I have received no compensation from the Leukemia & Lymphoma Society or anyone else for writing about their Moms In Training program. All opinions expressed in this blog post are my own.

I Can’t Write About Spain

I want to write about how amazing last week’s trip to Spain was. Because truly, it was wonderful. I needed that change of scenery. I needed to get away from the stress of day-to-day life. David and I badly needed that time together to be a couple and not caregivers. We got that in Spain and it was lovely. It was so very worth it!

Some day, we’ll go back.

We had a whole week abroad free of worry (for the most part). And I wish I could say that I feel refreshed after that change of scenery, but I don’t. I know I should feel happy – my soul renewed and inspired – and I should be ready to tackle everything all over again. I feel conflicted instead of happy. Less than a day back and the blanket of depression I’d tried to leave behind me when I got on the plane to Madrid enveloped me all over again. Every time I’m asked how Spain was, I say, “it was…good.”

Spain was awesome.

On the other hand, I was not awesome; therefore Spain was…a mixed bag.

I just want to forget the less wonderful things, but I can’t. I’m stuck.

I spent a lot of the week battling a nasty cold that seems to have turned into a sinus infection. I dealt with insomnia (which hit at different times than my husband’s insomnia). Half the time I longed for the comfort of my own bed and an ability to recover from my cold without missing out on a whole world outside the hotel. I was so overwhelmed by many of the wondrous things we saw and yet I lacked interest in other things that I usually would enjoy. I had very little appetite to take full advantage of the foods and wines I had been looking forward to trying. I was so out of it by the end of the trip that I accidentally forgot a painting we had bought in Seville in the hotel lobby before we left on a train back to Madrid. Then on our last night in Spain, David and I argued, my debit card was eaten by an ATM, and I woke up in the middle of the night with a debilitating migraine that had David looking up the cost of medical care for tourists.

There was a lot of bad. It wasn’t all bad and in fact I felt mostly relaxed while in Spain, but there was enough bad to reinforce the feeling that the universe continues to punish me for something that I’m not even aware of doing.

That’s ridiculous, I know. This is life and there are good things and bad things and if I could just remember to think more about those good things than the bad things, I could be a much happier person.

I want to focus on the good. I want to write pages and pages about the magical town of Sevilla and the sheer awesomeness of the architectural details we saw everywhere in Spain. I want to offer recommendations for places to try for tapas and let you know that Spanish in Spain is different than Mexican Spanish. I have lists to share – of American things we’d miss if we ever moved to Spain and things that Spain does better than America. I have nearly four hundred pictures to show off, many of which only offer hints of how mind-blowing everything was and really need some narration!

But I’m depressed. I’m still sick and I had another migraine last night. And it’s December, which has traditionally been a terribly hard month for me anyway.

So instead of writing about Spain, I wrote this.

I’m sorry.

Inside the Actor’s Studio with Ewokmama

Yes, I’m using a prompt for this NaBloPoMo post. Don’t worry – I wrote it on the right day. :) (I’m in Spain right now and that’s just how it’s got to be!)

  1. What is your favorite word?  Adore (back when I was too nervous to say that I loved David, I told him I adored him)
  2. What is your least favorite word? Irregardless (it’s actually a word, but it totally shouldn’t be!)
  3. What turns you on creatively, spiritually or emotionally? Humor. There is nothing like laughter to get me in the mood for just about anything.
  4. What turns you off?  When someone tries to tell me what I “really” think/mean/should do.
  5. What is your favorite curse word? I know this isn’t very original, but I do love the work fuck. I used to ride my bike down the street as a child shouting it into the wind. It’s very versatile, and even better when combined with a string of other swear words.
  6. What sound or noise do you love? Raindrops on the forest floor (which is funny because I don’t even like the outdoors).
  7. What sound or noise do you hate? An alarm clock buzzer, especially when used in a commercial!!
  8. What profession other than your own would you like to attempt? Maybe acting, which isn’t a far stretch from being an administrative assistant, honestly…but maybe I’d have more interesting things to wear and other people to do my makeup and hair.
  9. What profession would you not like to do?  Cleaning. OMG do I hate cleaning! I could not make it as a janitor.
  10. If Heaven exists, what would you like to hear God say when you arrive at the Pearly Gates? Oh…yeah, sorry about that. Here’s an endless supply of mojitos for your afterlife.

Twist Me Up And Wring Me Out

It’s only Tuesday? I thought as I stared at the pill organizer. How is that possible?

The anxiety in my chest grew. But that’s what day the organizer told me it was. The next dose of medication was right there. My phone agreed that it was Tuesday, as well. I shook my head and sighed.

I can’t wait until Friday.

Yesterday had involved an insulting call from the social worker at the clinic: “Um….hiiiiii. How are you today? How’s Jack? Um, I’m calling because Gina (the child life specialist) and I thought we should sit down and talk with you on Monday about…umm…Jack’s…school isssssuuuuues.”

My reply was something like, “Right, well, I know Gina thinks it’s school avoidance but I really don’t think that’s the case. Jack is very upset with himself when he can’t make it to school. And this isn’t new – it’s been going on since treatment started – it’s just that we thought it was normal due to the intense treatment. He was missing school then anyway. But treatment is less intense now and he still has these problems and he’s supposed to be able to go to school. In any case, I won’t be there on Monday – his dad is bringing him into the clinic. You can talk to him if you’d like.”

“Oh, well, okaaaay. Well, it’s you we’d like to talk to. So, um…alright. We won’t do that then.”

And then she (absolutely the least helpful professional I’ve ever met) droned on and on. She said some stuff about how special and smart and sensitive Jack is and at some point I just tuned her out. Sure, she WANTS to help…but she is completely inept. I could hear her grasping for the proper words to use when talking about Jack’s ‘issues.’ It was painfully obvious that she was stepping lightly. She was in parenting territory, something that she’s proven before that she knows nothing about, and I hadn’t even asked for her help.

Lady, turn back now. You don’t belong here.

A couple of hours later, I chatted with our nurse case manager about Jack’s lab results. They were good enough that he could the next day’s dental appointment, but the acidosis hadn’t improved at all over the weekend, so they instructed us to increase the sodium bicarbonate from two pills a day to four. And let me know that chemo can’t be taken at the same time as bicarb or anything else…which I hadn’t realized before.

Oops. I’d been screwing up the pill administration for…oh, almost two years now. Great.

Later that evening I took my 13-year-old cat to the vet and walked out of there $120 poorer and with no definite answers. ‘Cause that’s how I like to party.

So today, as I stared at the pill organizer and the bottle of antibiotics sitting next to it, I shook my head and sighed. Really, how could it only be Tuesday?

I gave Jack four horse-sized antibiotic pills. He actually chewed them all up without incident.

I was more than surprised.

I asked Jack to pick out his own DVD to watch at the dentist office (of course he chose Dr. Who) and off we went. It would be okay…I hoped.

The appointment went well, all things considered. He certainly yowled less than he did at his last appointment. His teeth got cleaned and x-rays were taken and that’s what matters, right? Not the stand-offish dental hygienist who clearly thought that the fact that he wouldn’t sit still was a discipline issue. Not the tears all over my kid’s face from being essentially trapped while he was poked and prodded in a sensitive place.

[Take a 7-year-old who isn't a great brusher, add a blood disease and suppressed immune system that makes it dangerous to floss, and what do you get? An uncooperative dental patient.]

Halfway through the appointment, Jack complained of chest pain while laying in the tilted-down chair and it only got worse. We went to the store to grab some tums (I’m not organized enough to carry them with me wherever I go yet) and sit for a bit while I had a warm beverage to calm my rankled nerves. I had to carry Jack through the store and he slumped in his chair when we sat down. After half an hour, the tums still hadn’t helped.

So we followed up that dental appointment with a trip to the ER, where Jack got an EKG and a chest x-ray per his oncologist’s orders. They gave him Maalox and, after a while, his pain had gone from a 5 to a 1. They sent us home.

This morning in between staring at the pill organizer with consternation, giving Jack five spoonfuls of pills in nutella, and attempting to get us both out the door and emotionally prepared for the dentist, I’d forgotten to administer Zantac. I’d given him four antibiotic pills, two sodium bicarbonate pills, and one Diamox pill…but forgot the antacid, which is a liquid.

Ugh.

I bet tomorrow I’ll stare at that pill organizer and shake my head all over again.

***

School, Special Needs and Sugarcoating Childhood Cancer

Yesterday I met with Jack’s principal and the district nurse to update our 504 plan. We are getting access to a home educator three hours per week to work with Jack when he can’t make it to school. I have to give HUGE props to Jack’s teacher – she has really stepped up to get us support and arranged this meeting in the first place. I can’t even express my overwhelming gratitude toward her! I’ve been much too occupied with trying to get Jack’s health stabilized and was just going to wait on the school issue (especially since he was keeping up anyway). But it was done for me! People can be really amazing!

I brought a letter with me from our oncology office regarding the need for IEP assessment, as well. Back in the spring when I requested an IEP process be started, I apparently did not do it in the exact right way because the district ignored it and had the school work with us on a 504 plan only. I didn’t fully understand the difference between IEP and 504 at the time, so I didn’t push the issue. Since then, I’ve learned a lot more about supporting kids with cancer in school and seen that even this far out, new side effects can pop up. At Camp Okizu earlier this year it was made clear that IEPs are really important for kids with cancer because even if they aren’t showing any significant issues right now, late-term effects are very common. Baseline testing can be really, really valuable when/if problems pop up later.

So when Jack was hospitalized in August, I brought up the issue with the hospital social worker and she drafted a beautiful letter for us! I’ve been sitting on the letter because Jack has barely been IN school anyway – it could always come later, I thought.

The principal took the letter in stride, but the district nurse was clearly flustered by it. Immediately reasons why she thinks we don’t need an IEP came pouring forth. I don’t completely disagree with her – Jack has to be in school to get services and he’s barely been there at all right now. Plus, the IEP requires a lot of assessments and that can be strenuous.

But then the district nurse said, “Well, treatment has come a LONG way! Most kids don’t have any lasting effects!”

And then I kind of wanted to punch her.

I wanted to tell her about how few new treatments have been approved for use in children and that oncologists are still using the same drugs developed between 1950-1970. In fact, the FDA has only approved ONE new drug exclusively for pediatric patients in the last 20 years – despite the fact that the prevalence of childhood cancer has risen 20% in that same time frame*.

I wanted to tell her that she’s wrong – in fact, two thirds of kids will have long-lasting chronic conditions that are caused by the very treatment saving their lives.

I wanted to point out that while more kids are surviving cancer, side effects from treatment are still a huge challenge. Quality of life for childhood cancer survivors needs a lot of improvement.

I didn’t say those things, but I did tell her that Jack had been screened for sensory issues and further testing was recommended. I informed her that we’ve already seen an impact on his abilities in math and physical education. I told her we need a baseline in case he has complications later.

“Well, we don’t want to push him physically when he is going through treatment,” she said.

Ugh. First, you don’t need to tell ME that. Second, that’s not what this is about, lady! It’s about preventing further decline and ensuring the best possible future for Jack.

The nurse did point out that an IEP does not provide a home educator, which makes the 504 more beneficial at this time. But the home educator was apparently a special benefit anyway and it ends January 7th. Because of that, we agreed to stick with the 504 for now and then meet again to reassess in January (which happens to work anyway – not much to be done about any of this during the holidays).

I came out of the meeting with mixed feelings. I am happy that the school is supporting Jack with the 504 plan and there was absolutely no hesitation as far as that was concerned. I’m a bit concerned about future struggles related to the IEP and assessments, though. I’ve heard a lot of negative things from other parents trying to get IEPs for their kids and based on this interaction, I’m just not confident that this will be easy.

At least I’m getting better at dealing with hard things, right?

Later in the afternoon I picked Jack up from school. One of his classmates came up to ask me if Jack really did have cancer and how he got it. I told her yes, he does, and we don’t know how he got it – sometimes people just get cancer. She seemed like she had more questions, but Jack started pulling on my arm and she walked away.

I hope we didn’t scare her. I wanted to give her a better answer but I didn’t have one. As much as I’d like to deny the reality of what we are living with, sugarcoating it isn’t the right answer.

————–

* Source: Unsung Heroes by the American Childhood Cancer Association, published 2011. (This link opens a PPT file.)

Headache Season

Apparently headache season has begun. Most of this year my head has blissfully allowed me to go through life without threatening to randomly explode and I was very much enjoying it – until about three weeks ago. I don’t know if it’s the stress or hormones or the weather changes or a wonky alignment of the planets, but suddenly my head is either in great amounts of pain or threatening to be.

I’ve suffered from migraines all my life. As a kid, I didn’t know they were migraines – I just knew my head hurt and nothing seemed to help. I used to bang my head against the wall in desperation. It wasn’t until I was in my early twenties that I looked up these particularly bad ‘headaches’ and realized they were migraines.

This time two years ago I was having migraines several times per week. I tried various things and nothing seemed to help. It was like torture and I was going out of my mind! Then the abortive medication I took for them (Midrin) was suddenly taken off the market (apparently it had never been approved by the FDA!) and I headed to the neurologist’s office to see what else could be done. Because I have a sulfa allergy and the majority of migraine medications contain sulfa, my neurologist informed me that there were very few options. I could try Imitrex (which is a cousin of Sulfa, so might be okay) and if that didn’t work, I was left with Botox.

Uh, no. Please, no.

The neurologist prescribed a preventative called Topamax, along with the abortive Imitrex. Not only did the preventative make me utterly stupid (I started calling it Dope-amax) but I got break-through migraines anyway and the break-through ones ended up being worse! So I stopped the preventative and worked on being super strict with my diet and sleep routines. I stopped drinking any red wine at all because that definitely triggered sudden, severe migraines. Imitrex worked well enough and slowly my migraines disappeared as long as I was careful.

In the last two years, I’ve gone several months with no migraines at all. It’s been miraculous! I have no explanation as to why they’ve left me alone, but boy have I enjoyed it!

And now they are back in full, blind-in-one-eye force. I feel like I’ve been transported into Flowers for Algernon or Awakenings.

I still don’t drink red wine – or eat red grapes – and I have cut out chocolate, as well. But suddenly the migraines are back with a vengeance and seem unrelated to anything. Sure, maybe it’s due to the stress of having a kid with cancer but why NOW? We’ve been dealing with cancer for almost two years! It doesn’t make any sense to me.

And, as often happens with migraine medications, the damned Imitrex isn’t working well at all anymore. The medication reduces the pain to headache levels but I feel run down for days after I take it. Then the migraine comes back and the cycle repeats. As if that isn’t enough, my throat starts tightening when I take it now (perhaps an allergy is starting to develop?) and, last night, I had severe stomach pain afterward that nearly sent me to the emergency room.

So, I’m back to square one and feeling rather hopeless about it all. Why can’t my head just cooperate? Why are migraines so horribly difficult to prevent and control?

Do you get migraines? What helps?

What Killed The Video Star?

I was IMing with David this morning (as I do) and he told me about a song that he is surprised he likes (Harlem by New Politics), which led me to YouTube to check it out (I don’t like it). And then I fell into a rabbit hole of terrible music videos. It was just one after another as I searched for something that didn’t suck. I saw sex where it didn’t make sense, odd characters and costumes, weird runny gloop… I decided to put together a list so that y’all wouldn’t have to endure what I did.

Although I suppose you might get curious now. Sorry ’bout that. At least I warned you, right?

WTF? Videos

Miley Cyrus – Wrecking Ball (why is she making out with the sledgehammer?)Lady Gaga – Applause (creepy!)
MS MR – Hurricane (omg gloooooop!)
MGMT – Electric Feel (just BAD!)
Churchill – Change (holy headache!)
AWOLNATION – Sail (girl needs to lay off the cigarettes, clearly)
Imagine Dragons – Radioactive (is this a JOKE?)
Arcade Fire – Reflektor (um, nightmares)

I did find some passable videos. They weren’t bizarre or completely sexed up or lacking in any connection to the meaning of the actual song. They were just kinda boring, which was actually an improvement on the gloop.

SNOOZE Videos

Lana Del Rey – Summertime Sadness
Foster The People – Pumped Up Kicks
Pearl Jam – Sirens
Girl on Fire – Alicia Keys
Royals – Lorde
Rihanna – Stay

 

Finally, I did find a few great music videos that captured the feeling of the song perfectly and didn’t have any WTF moments! These are actually worth linking.

I Approve! Videos

Macklemore & Ryan Lewis – Thrift Shop
Anna Kendrick – Cups
Tegan & Sara – Closer

 

And then I gave up because THREE, you guys. I found THREE.

I remember back in the day when music videos were the big thing. And now? They pretty much suck. Boo, I say, BOO. Bring back the video star!

Have you seen any good music videos lately?

FAQ About Jack’s Leukemia Treatment

Q. How did you guys find out Jack had Leukemia?

A. Starting around Christmas in 2011 when Jack was five and a half years old, he started feeling unwell and had strange symptoms that came and went. One minute he would be running around happy as a clam and the next he would be curled on the couch complaining of aching bones. He also had a low grade fever, fatigue, headaches, unusual emotional outbursts, and I noticed a loss of dexterity when he was playing with Legos. This went on for over a week before we decided it wasn’t a flu, growing pains, or him trying to get out of school. I took him to see a pediatrician, thinking it might be Lyme Disease or Mono. Upon examination he looked fine to the doctor – just a bit pale – and the doc thought he was just anemic. We decided to double check on his iron levels with a blood test. That blood test ended up showing that he had large amounts of unusual white blood cells, which indicated Leukemia, and he started treatment the next day.

Q. What kind of Leukemia does he have?

A. Leukemia is a cancer of the blood. Jack’s immune system just happened to go a little wonky and started producing too many immature white blood cells – called lymphoblasts – that crowded out the normal cells and made it impossible for him to fight off illness. This specific type of cancer is called Pre-B Acute Lymphoblastic Leukemia (or ALL for short). ALL is the most common type of Leukemia among children.

Q. What caused Jack’s Leukemia?

A. We don’t know. In some kids this type of cancer can be genetic but this is not the case with Jack. He was never exposed to unusual doses of radiation or other chemicals. Apparently we all make cancer cells at some point, but most of those cells just get flushed out and never get a chance to become a problem. Jack’s cancer cells ended up sticking around and multiplying instead.

Q. Is he done with chemo? How long does treatment last?

A. Treatment for male children with ALL lasts about 3.5 years and it goes in three phases. Jack is currently in the third phase, called Maintenance, where no cancer cells can be measured in his blood but he must stay on lower doses of chemotherapy in order to make sure he doesn’t relapse. If all goes well, he is expected to be done with treatment in March of 2015.

Q. How often does he go into the hospital for treatment?

A. He goes in every month for an infusion of Vincristine, which is one type of chemotherapy administered through an IV that is hooked up to a Broviac catheter (which stays in his chest throughout treatment). Every three months he also gets a lumbar puncture and a chemotherapy drug called Methrotrexate is put into his spine to eliminate any possible cancer cells that could be hiding in his spinal fluid. He recently started going in monthly for a nebulizer treatment that will help protect him from pneumonia and he has an eye exam every six weeks to ensure that his spinal fluid pressure hasn’t damaged his optic nerve.

Q. Does he receive any treatments at home?

A. Yes, he takes anywhere from 2-5 different types of pills on any given day, including chemotherapy, steroids, antibiotics, and antacids. We also have to maintain his Broviac catheter to make sure it stays infection-free and he doesn’t develop a clot that closes the line – this requires daily flush of an anti-clotting medication called Heparin and weekly changes of the dressing. We also draw blood through the catheter at least once a month, and sometimes several times in a week.

Q. Can he go to school?

A. Yes, if his ANC is above 500 and he feels well enough to attend. We have a 504 Plan and an IEP in place to accommodate his unique educational needs.

Q. What is ANC?

A. ANC is a measurement of the immune system’s ability to fight infection. It’s basically a count of how infection-fighting white blood cells are present in a blood sample. Healthy individuals (who are not immune-suppressed) typically have an ANC over 1,500 but it’s a good day if Jack’s ANC is between 500 and 1,000.

If Jack’s ANC goes below 500, he is considered “neutropenic” and has virtually no ability to fight illness. He has to be taken off chemotherapy and isolated from people who might pass on a bug. If he develops a fever while the ANC is under 500, he has to be hospitalized and given antibiotics because it’s assumed he’s developed an infection.

Q. How are you guys coping?

A. That depends on the day. Cancer has definitely changed how we live our life and we are constantly on the watch for any issues that could arise with Jack. He misses school often due to treatment appointments or side effects. We are chronically stressed and tired and worried. But we are getting through it somehow. We do have a lot of people cheering Jack on and that helps.

Q. Do you struggle financially?

A. Yes, although it’s not due to the cost of treatment (which is thankfully mostly covered by insurance). Finances are more challenging because we have increased expenses when we have to board our dog during a hospitalization or order take-out multiple times a week or get away for a weekend to avoid burnout, and it’s also very difficult to manage finances when your brain is on overload. I never forgot to pay a bill until cancer came into our lives.

Q. How is Jack doing?

A. For the most part he is doing better than we are mentally. He doesn’t know enough to be aware that this could all end badly, although he does know that cancer is serious. He has tolerated the chemotherapy treatment very well for the most part and has avoided a lot of the issues other kids have with the treatment regimen. You generally can’t tell by looking at him that he is fighting cancer – he has a full head of hair and a cheerful, quirky personality.

He has recently hit a rough patch with his health and we are still trying to navigate that and figure out what is causing it. Our oncology team has been adjusting his medications to try to increase his ANC and running a lot of tests. This is somewhat unusual at this stage in treatment, so it has us all worried.

Q. Do the doctors know if he’s going to be cured?

A. They assume (based on research) that he will be cured because over 90% of children with ALL are cured with this treatment regimen. More specifically, he is a standard-risk patient because he has responded as expected to treatment and has no chromosomal abnormalities, so the chances that he will be cured are between 90-95%.

It’s important to note that “cured” means that there are no signs of the cancer returning for five years after treatment ends; this is referred to as Event-Free Survival (EFS). And while it’s unlikely that he will experience relapse, he has a slightly higher risk of developing other cancers.

Q. Will he have lasting effects?

A. Most likely, yes. Some of his major organs (heart, lungs, liver, kidneys) will probably be negatively impacted long-term by the chemotherapy treatments and Jack will need to be screened annually for the rest of his life because he is now more likely to develop other types of cancer. Kids who are treated with chemotherapy in the spine are particularly at risk for learning disabilities related to memory, processing speed, and multitasking – we’ve already seen these effects in Jack. He may also encounter fertility issues later in life.

Q. What can we do to help?

A. Above all, I urge you to donate money and/or time to finding better treatments for childhood cancer. Childhood cancer only receives 4% of federal funding, even though cancer is the most common non-violent cause of death in children in the United States. That means that 96% of funding relies on charitable organizations and individuals. You can make a huge difference in so many lives by donating to childhood cancer research.

If you are more interested in helping our family specifically, you can check out our Cancer Fighting Wishlist or email me directly at crystal (at) ewokmama [dot] com.

***

Thanks for taking the time to read this and to follow our story. If you have any additional questions, feel free to ask – it’s highly likely I’ve forgotten something here!

Just Write [108]: In Charge

He walked into the bedroom where I was laying alone in the dark, hiding. A mountain of wadded up tissue was on my nightstand and my phone was in my hand. New tears popped into my already puffy eyes, even though I’d already been crying for hours. How could I still have tears left?

“I know I’ve said this before, but you need to ask for help. You need to tell me what you need me to do.”

“I don’t want to be in charge of everything,” I mumbled. I was completely enveloped in self pity.

“You don’t have to be charge of everything,” he replied.

I thought ‘you’re wrong.’

You need to tell me what to do.

That right there means I’m in charge. I have to know what needs to be done and I have to delegate the things I can’t do.

I never wanted to manage another person. Long ago I recognized that counting on other people to do things in my stead is not something I excel at. My childhood didn’t prepare me for that – it prepared me to take care of things myself. And that continued beyond childhood – I’ve made my career as an administrative assistant – someone else’s right hand. I’m the one people depend on, not the other way around.

Of course, being a parent means I am managing someone, albeit in a different way. I am the ultimate authority in my house about what happens with my son. I chose that role and I accept it.

I am not the best boss, but I fulfill my commitment. I’ve helped my son learn and grow and even thrive (despite his illness and my own shortcomings).

But taking care of a special needs child demands more of me than I ever knew was possible. I am not looking to unload the responsibility or shirk my duty. It’s just that sometimes it is exhausting. Because regardless of how many parents Jack has, I am still in charge.

I am in charge because I know more about him and his medical condition than any of his other parents – by choice. I am in charge because the doctors look to me first for information. I am in charge because I have the job that supplies the insurance. I am in charge because I have primary custody – again, by choice.

I am in charge because, in so many instances, I am the ONLY person Jack lets be in charge of things related to him.

I make his doctor appointments. I sort his pills every week and refill his prescriptions. I call the clinic…over and over. I refresh the test results page and I calculate his ANC. I arrange for childcare or changes to his schedule with his dad and step-mom. I know which foods he eats and which he isn’t into anymore. I know when he’s breathing funny or he is on the brink of a meltdown. I’ve documented so much of his life – on paper and in my mind – and I am the default caregiver because of it.

I could ask for help with all of those things, but taking care of Jack is so ingrained in me that it doesn’t even occur to me to ask for help. Why would I? It’s MY JOB. I’m his mother.

No one can lighten that load – I can delegate every parenting-related task I have, and I will still feel the weight of each responsibility because I am in charge no matter what anyone says.

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This post was inspired by Heather’s Just Write – an exercise in free writing your ordinary and extraordinary moments.

Just Write: He’s Okay…Mostly, I Think

“How’s Jack doing?”

I’ve been asked this question at least five times so far today. Each time I give the same answer in the same way, “Yeah…well, eh, mostly. He will be okay, I think. He’s just not feeling well after chemo yesterday.”

He was doing just fine last night. In fact, he was very energetic and LOUD, humming or squawking while playing with his Legos. It was overwhelming to me, as I’d just come home from my trip to Type A in Atlanta. I wanted quiet.

This morning, though, it was too quiet. Jack crawled on the floor from his bedroom to the living room. He laid down on the couch while eating breakfast and I covered him with a blanket while pushing play on iTunes so he could listen to The Postal Service at low volume. He ate his waffle slowly, and afterward he leaned on me to get to the bathroom to halfheartedly brush his teeth. Then I picked him up and carried him back out to the couch.

He talked in hushed tones and complained of stomach pain. I smoothed his hair away from his face as I took his temperature – 98.0 degrees. I asked if he wanted to try to go to school for a bit and see if he felt better. His big brown eyes squinted up at me and he said, “I just don’t have any energy, Mom.”

“Okay, honey. I’ll tell David to come home from work. You just rest,” I replied.

I looked at our finances while I waited for David to come home from work. I wondered if we could somehow make it work on one salary so that I could stay home full time with Jack. I worried this was a pattern that would not go away. I added and subtracted and, with a knot in my stomach, acknowledged that it was impossible – we have too much debt and a large mortgage payment.

I called the clinic to get confirmation of Jack’s ANC. The nurse told me it was sitting at 690, which is fairly decent but not great. She asked how he was doing and then said, “Call us if he isn’t feeling better by the end of the week.”

I called the school and answered the question again. Then I drove to work, where I told a few more people that Jack wasn’t feeling well. I got a call from my sister in the afternoon, and I spoke to one of the care providers at Jack’s after-school program – both asked and I explained in that halting way.

Jack’s okay…mostly. I think. We’ll see.

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This post was inspired by Heather’s Just Write – an exercise in free writing your ordinary and extraordinary moments.