A Little Nitty Gritty

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Hello Friends,

I’ve been writing about a lot of the bigger picture lately, so this update will cover some of the details on Lulu and the family.

Although she’s still doing well overall, we’ve had a bit of a detour this last couple of weeks.  Her ANC (basically, her immunity measured in blood cells) was rising to slightly beyond protocol.  The docs like to keep her counts between 500-1500 during Maintenance Therapy, to ensure that the leukemia doesn’t have a chance to come back.  Lu’s ANC was climbing into the 1600, then 1700’s.  To counteract this, they upped her chemo dose by 25%.  Unfortunately, this made her nauseous, and she started vomiting again Ugh, just pulling out the ol’ puke buckets made us feel a bit sick too. We added some more anti-nausea medicine to her regimine, which mostly did the trick.

But then we discovered that her ANC had been knocked down WAY too far.  The week of her 6th birthday, she had her usual in-patient spinal tap and IV chemo where they also check her bloodwork.  Her ANC was down to the low 100’s.  This basically meant she’s on lockdown until her counts rise.  She had been looking forward to, and talking about, her birthday party at Chuck E. Cheese for, oh, the last 6 months?  Some of the docs and nurses said we could probably go ahead with the party, weighing out the costs/benefits.  My gut told me not to, as disappointed as I knew she would be.  I couldn’t feel good about her having a fun party, but possibly ending up in the hospital the week after.

Bonnie and the nurses brought  a cake and presents to her in clinic, which at least felt like a bit of a celebration.  We also decided to make a quick trip to her school, after I had her teacher promise to flea-dip the kids in antibacterial gel.  We brought rainbow-colored cupcakes, and her class was beyond precious (see silly faces pic below)!  We couldn’t be luckier to have her teacher and school on our side.  They’ve been incredibly loving, patient and flexible with our ever-changing circumstance.

Lulu was more understanding than I ever would have guessed she’d be about missing her birthday party, but we were still so disappointed for her.  Her counts ended up not rising as expected, and the week after she was only in the low 200’s.  At least we knew we had made the right call to cancel her party.  This meant we’d also have to forgo Thanksgiving with friends.  But we made the best of it, instead, staying home and eating Jimmy’s delicious chicken with prosciutto over pasta.  YUM! We reminded ourselves of last year, when we spent every single holiday in the hospital, and counted our blessings to be together in our home this year.

Her OCD – like behavior continues to be an issue, and we’re doing our best with that with what we know and are learning.  It can be VERY trying sometimes and we try to keep our patience.

Max is continuing to excel in school and sports.  Luckily, he’s been staying healthy.  That is, until one Monday morning … Suffice it to say I was taken unawares when my son became suddenly ill on the way to school.  Well, he did tell me he didn’t feel well in the morning, but I pretty much told him to suck it up, eat some breakfast and get to school.  I regretted those words wholeheartedly a few minutes later.  After ALL the puke I’ve dealt with over the past year, you’d think I’d have emergency bins in the car.  I used to, and still bring them when Lulu has to travel, but my son is never sick!  He gets a bit carsick, but never actually GETS sick in the car, so when he told me he still felt icky in his tummy I continued to chalk it up to a little nausea.

Then, it began …  The best way I can describe it, is that he threw up like a boy.  It just came out without any focus or finesse.  Lulu gives me just the right amount of warning, and we’ve never missed the bucket.  Max just exploded all over.  It hit his chest first,  then all over his lap into the crook of his legs, which spilled between and under his butt and onto my back seat.  There was nowhere to pull over, so I told him to try to find something to throw up into.  Onto his shoes it went, and I started yelling “open the window, and puke out the window!!!”.  He faced the window, and full on puked into it, while it was still rolled up. Into the crack of the window and the door it went, dribbling onto the floor.  He finally started unrolling the window, but the damn back seats have the childproof windows that only roll down halfway, so more volcanic eruptions onto the side of the window.  I finally pulled over to a closed gas station, where I got him out and started dry heaving myself, as the smell of him wafted up and overwhelmed me.  I’m sure it was quite a site for the passers by.  And not a wet wipe or a kleenex to be found.

Luckily, it was just a 24 hour flu, but I now feel like I’ve been on an episode of Sienfeld, as I will NEVUH get the smell out of my car, and may have to sell it!

In the scheme of things, these are such small trials.  Jimmy and I are so grateful to continue on the work path, and working on finding some quality time together as well.  I’m heading back into doing more photo shoots as my consulting job ebbs for the time being.  Jimmy’s working from home for the holidays and I can’t wait to put up the Christmas tree this year, to circle round it together and celebrate all of our health and good fortune.  Even if there might be a puke bin hidden underneath the pine branches …

Love,

a.l.l. of us

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To my Big Boy on Thanksgiving

Hello on this special holiday!

There are so very many things to be thankful for this year.  But I’m dedicating this Thanksgiving to my son, who sits by the sidelines while his sister receives positive and negative attention. As she is showered with gifts, he resides quietly in grace. He thrives despite stress, and brings his gift of laughter to the worst of situations.
I love you ‘Bugs’, you are an amazing unsung hero, wise beyond your years, and I’m so thankful to be your mom.

Happy Thanksgiving to all the unsung heroes out there!

Love,

a.l.l. of us

Carrot Juice or Chemo?

They say there are two things you should never talk about at the dinner table: politics and religion.  I beg to differ.  I’d argue that food has become almost as controversial as politics or religion.  Think of all the nutrition information out there, and how confusing it is, yet everyone has a strong point of view on the subject:  Lean meat protein is good. No, meat is bad.   If you know where your meat comes from, it’s ok to eat it.  No, plant based protein is the only healthy option.  Fish is healthy. Fish is toxic, etc.  Then, there are the confusing terms and labels like farm raised, free-range, grass fed, omega 3 added, organic, fortified, ‘natural’, and on and on and on …

I have gluten sensitivity (celiac), which can be tricky in a social environment.  Although I always try to be subtle when asking the server for gluten-free options, I inevitably end up in a conversation about gluten.  People always like to know how it affects you.  Well, if you look up the main symptoms, it doesn’t exactly make pleasant dinner conversation.  For me, it was throwing up.   Yackity-yak-yacking after gluten-filled meals.  Mostly, people get BAD gas.  I’m not talking garden-variety gas; I’m talking peel the paint off the walls, asphyxiating green gas bombs!  Do you still want to know the symptoms?  The worst affect is the villi in your stomach lining get damaged and lie flat, which doesn’t allow proper absorption of vitamins and minerals.  This can lead to a host of other ailments, including fibromyalgia which I suffer from.

Since I’m not a big pill-taker, I prefer to find natural alternatives whenever possible.  This has led me to have a fascination with the link between food and wellness.  I’ve done some research on various therapies including The China Study, which is a plant-based vegetarian diet said to reverse heart disease and cancer.  The Gerson Therapy, a very controversial cancer therapy that involves heavy juicing, coffee enemas and the like.  I’ve also looked into Ayurveda, veganism acupuncture, etc.  I’m not endorsing or following any particular protocol, but I like learning about different approaches.

At our house, we strive (don’t always succeed) to eat organic and local products, within the balance of a fast-paced lifestyle, and a love of good restaurants and eating out.  Yes, that means we eat fast food sometimes.  I’ve had great success with keeping my symptoms at bay when I’m eating well.  This means clean, mostly organic whole foods.  However, I’m not doing so well with that this year and wow, can I tell the difference!

So … when Lulu was diagnosed with cancer, it made me question a lot of things including the food she eats.  She’s a notoriously picky eater, and has battled our food choices since I can remember.  I’m sure having an undiagnosed infected appendix affected her digestion as well.  I’m sure it wasn’t any one thing, but I’d like to try control the elements I can to help her heal.

That being said, people have suggested we try some alternative therapies including heavy vitamin therapy, juicing, and even ingesting silver as of recent.  I like my alternative therapies to have science backing them up, but with the amount of free-floating information out there, it’s more than confusing.  What I know for sure is that Lulu’s cancer was so fast moving there was NO WAY we would ever consider an alternative therapy.  If we hadn’t gotten her started on chemo immediately, she wouldn’t be here today.  Within a week after diagnosis, her bone marrow had been so overloaded with leukemic blasts that she couldn’t walk and was in extreme pain.  Do I wish I could give her some carrot juice and a coffee enema to cure her?  YES!  But the science simply isn’t there.  Do I hate giving her toxic medication every single day that may cause long-term harm to her?  YES!  Do I worry she won’t be able to conceive?   That her OCD is mostly caused by the drugs?  That she may never be the same little girl we had before?  You guessed it, yep.  It’s awful feeling like you are poisoning your own child with the very thing that is saving them, knowing there is no alternative to treat her.  Aside from horrifying cancer itself, it’s devastating to see children die from the side effects of the drugs, not the disease.

What I hope for the future of medicine is that we can help fund studies to incorporate some less toxic alternatives into cancer treatment.  Nutrition related or not.  It’s not simple, it’s tragically difficult, and I truly believe in the sincerity of our caregivers. I’m not preaching, but I am wishing, hoping and believing.

We’ve been honored to find some brilliant scientists right here in our own state that are doing just that.  Yesterday, we donated the $3000 from Lulu’s lemon-aid stands to The Blood Research Institute.  They are on the brink of a huge discovery, which could make enormous strides towards a cure, and in reducing toxins during treatment.  We know that our donation is small compared to what they need, but we hope it will inspire others to do the same.  With kids like Lulu (Love 4 Lulu), Bo (Go Bo Foundation) our new friend Emma Rose (Emma Rose, A patient Helping Patients) and others, these gestures can add up to some real change.

Who knows, maybe in the near future we will take our chemo with a carrot juice chaser?

Love,

a.l.l. of us

Lulu’s cameo in a music video

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Lulu has a cameo in the end of this music video (click on link below). The This Time Tomorrow Foundation has been a wonderful supporter of Lulu, and other children with cancer. We are honored to have her take part in this work.
Thank you!

Love,

a.l.l. of us

Lulu’s journey through pictures

Today marks one year since Lulu’s diagnosis.  I found it too difficult to put the year into words, so I’m  wrapping it up in pictures, and Lulu’s art.

Thank you to the staff at Children’s Hospital, who saved our daughter’s life on multiple occasions over the past year, and continue to treat her, and us with love, respect and compassion.  Thank you to our community, whom we believe wholeheartedly gave us the strength to get through this year.  Thank you to those who employed us, and for the new opportunities that await us.  Thank you to all those we have left unthanked, but made a difference in our lives.  Thank you to my amazing husband and incredible son who are the strongest men I’ve ever known.  Thank you to Lulu, who’s had to deal with life beyond imagination, and has used her own, to cope with a world that defies explanation.  I love you. I love you. I love you.
One more year, five months and counting. Here’s to a.l.l. of us!
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