Day 20

Q&A with Ari on Sunday morning, June 24th. 

Q: Ari, how are you feeling today?
A: I love Ativan.  Where has it been my whole life?  These steroids they give me 3 times a day make me crazy.  One second I'm screaming my head off and telling everyone to move, and the next second I'm laughing like a hyena.  But the Ativan helps make me more Jekyll than Hyde. 

Q: What's the plan for today?
A: I've got nothin' going on.  My parents keep telling me I really need to bathe and walk around but I'm content staying in my crib all day long.  And I gotta be honest, I have them wrapped around my little finger these days so I'm guessing I will win this one.  (And every other one for a while.)

Q: What did you eat for breakfast?
A: The breakfast at 3am?  3 tablespoons of hummus and a cup of chop suey.  Or the 8am meal - spaghetti, penne, lasagna, chop suey, hash browns, and a pretzel rod.  And some milk.  I'm still hungry.  Will someone please bring me my hummus? 

Q: Have you gained any more weight?
A: Yes, 1/2 pound since yesterday.  And if they put that tube back in my nose, I'm just going to take it out.  Take that nutritionist.

Q: What can we get you?
A: I could really use a pedicure.  (So could my mom.  Actually, she needs a brow wax.  She looks like Sasquatch.)

Q: No really, if we want to help, what can we do?
A: Hmmm well here's the thing.  I'm pretty well taken care of right now.  I have all the Italian food I can eat, I have toys I don't want to play with because I'm tired and cranky, and I have a morphine pump whenever I think I'm in pain.  I'll spend the next two years being treated by the Jimmy Fund/Dana Farber and that's where they do all the research to find a cure for the disease.  My doctors are amazing and I'm so lucky to be treated in Boston at this world class cancer institution.  If you want to make a donation, all the kids like myself would greatly appreciate it. 

So many of you have asked me what I want to play with or what I like to eat or what you can bring my parents, and we are so thankful for all of the offers.  As you know, the next 6 months will be very intense, and my parents have promised to buy me a baby sister in September (even though it will be a lot of work), and so I am sure we will need more stuff and more help then. 

Q: How do you look as a short bald man?
A: Actually, I didn't lose all of my hair.  I probably will during the next phase of chemo, but right now, I look a little like Tom Hanks in Philadelphia.  But as a blond. 

Q: Anything we should know if we want to visit?
A: Most of the time, I'm not so into visitors.  I apologize I get fussy when people come in.  But I know my parents like to see their friends so if you come, try to engage me in something fun - like play a musical instrument or do a magic trick or bring me a picture (or a piece of gooey pizza).  I still love attention (in very short doses).  If I'm sleeping or in a funk, try me again in a week. 

Q: What else do you want us to know?
A: Please tell the nurses to stop giving me laxatives. 

Q: How are your counts today?
A: Basically the same as yesterday.  Nothing new to report.  I have a lumbar puncture tomorrow morning and I'm dreading it because I can't eat for 8 hours before the procedure.  Don't these people know I'm always hungry?! 

No more questions, I'm gonna go eat a grilled cheese sandwich and french fries as an appetizer for lunch.

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Day 19

Everyone passes the time differently while in the hospital.  One mom on our hall eats a Hungry Man beef pot pie every hour.  Some folks read or watch movies.  Others go to the gym across the street.  I research the disease, talk to the nurses, and blog (and procrastinate writing thank you notes).  Matt reads every article our doctors have ever written (and then asks them questions about them), works from the window bench (we gotta pay the mortgage somehow), and he spends a lot of time playing on the Ipad.

I am not sure what people did before these little portable devices were available to provide distractions for parents and of course patients.  Over the last week, while Ari was at the "nadir" of his treatment (tired/grumpy/in bed all day), the Ipad was a one stop shop for movies, games, and arts and crafts.  When he would refuse to do anything else, Ari would always watch music videos on the small screen. 

And Matt has been diligent when it comes to finding new and exciting apps to keep him and Ari amused.  Since Matt and I share an Apple ID, every new app appears on my Iphone.  In the past week, he's added a bunch of fun stuff for Ari - like Zoo animals, Magic piano, and Xylophone.  And he's downloaded a few cancer specific apps - like D-Oncology and LMT Hem.  And then a bunch of stuff for himself...Air Hockey, Hangman, F18 Landing... and... Atomic Fart, Fart Cushion, and Hide the Fart. 

For blogging research purposes, I experimented with these 3 applications.  Fart Cushion was my fave.  The other two fell flatulent.

(Matt is definitely my soul mate.)
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Daily update:

Counts are still on the up and up.  Blast count this morning remained at zero, and Ari's white blood cell and ANC count are slowly increasing as is to be expected when his body begins to make good cells again. (Yay)

And Ari must be feeling better and a little more feisty since he yanked his feeding tube out this morning.  Oops.  They will replace it on Monday during his next (and hopefully last) lumbar puncture (well, last during this phase...but they continue for the next 2 years. bah humbug), but now that he knows how to take it out, I don't know how he will keep it in.  That said, over the last two days, he did eat 4 avocados, 2 slices of Upper Crust pizza, a bunch of spoonfuls of hummus, a bag of bamba, two cups of spaghettio's, a bunch of pretzel rods, two containers of chop suey, and some other random nibbles.  Oh, and about 60 ounces of whole milk.  He gained about a pound since yesterday.  Here's hoping his cellulite returns soon!  (It's not fair if I'm the only one with it in the family.) 

We've had an eventful 24 hours (unfortunately) due to a little mishap with a blood transfusion (long story) and a scare with a decreased heart rate (which meant a visit from cardiologists at 2:30am) but everything turned out fine and the doctors were just doing due diligence to ensure Ari was healthy (umm you know what I mean).

I've received a few questions about remission and specifically, why Ari needs treatment if he is in remission (fingers crossed 2 weeks from now).  The answer is that leukemia is a cancer of the blood, not an organ, and the cells grows ridiculously fast.  The docs can almost guarantee there will be cancer cells hiding and if they don't do the 2 year protocol, the cancer will come back very quickly.

Ok, wanna see something cool?  This is Ari's chest x-ray from Monday June 4th compared to Monday June 18 (18th on the left).  I'm no radiologist, but what you're looking at is one perfectly beautiful chest (on the left...the thing that looks like a boob is his heart...and the other fuzz is normal) and one huge cancerous mass and a bunch of fluid in the pic on the right.  2 weeks!  Crazy...

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Day 18

I have become moderately obsessed with Ari's daily blood counts. I try not to get too caught up in the daily report (I only ask for a print out and spend at least 30 minutes every morning interrogating the docs and save the papers with my notes in chronological order to review all morning). The numbers fluctuate and it is common to see them up one day and down another, but I have been patiently waiting and watching for Ari's blast count to go down in the hope it hits zero.

And today it did!

I've had a spring in my step since receiving the news at 7am. I walked across the street to Starbucks this morning, smiling at the pedestrians, patients, and professionals crowding the busy intersection. And when the barrista asked how I was doing, my emotions got the best of me and I burst into tears and exclaimed, "my son's blast count is zero! Grande half caff please."

Here's the plagiarized medical explanation and significance (feel free to skip this part if you want and just know this is a very good update):

Ari's cancer, ALL for short (docs call it A.L.L. not "all"), is a cancer of the blood. The cancer comes from a cell in the blood called a lymphocyte. Normal lymphocytes are produced in the bone marrow and help fight infections. In ALL, cancerous lymphocytes are called lymphoblasts (or blasts for short). They do not help fight infection and crowd out the normal blood cells in the marrow so the body cannot make enough normal blood cells. One of the goals of treatment is to eliminate all lymphoblasts so that the body can resume making normal blood cells.

When we checked into the hospital, Ari's blast count was a 75, meaning 75% of his cells were lymphoblasts. As of this morning, 0% of his cells were lymphoblasts, or in other words, there was no leukemia detected in his blood (!!!). Since yesterday's lumbar puncture results indicated the spinal fluid was also clear, we feel pretty good that Ari is responding so well to treatment. There is still a chance the blast count could go up a tad in the next few days (and the docs say this is not a bad sign, because often the sample size is small, and some cancer may hide) but for now, all signs indicate that Ari is on track to be in remission by day 32 (give or take a few days).

The final indicator will be a bone marrow biopsy but they do not perform this until Ari's counts rise to normal levels once again.

Ari's incredible progress won him the prize behind door #2...a blood transfusion!   Don't worry, it won't hurt and will help him gain some energy back.

A snapshot of today's blood count print out with my favorite nurse's illustration of both the morning news and my current mood:

(This was my daily update...no clever intro today. I will work on something good for tomorrow.)

Have a great weekend!

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Day 17

It all started with Rock and Roll Elmo and Ari was hooked.  He had never seen Sesame Street or read an Elmo book or watched an Elmo's World dvd.  But it didn't matter.  There was something about the red furry monster that Ari found intoxicating and addictive.  Elmo made him giddy. 

So we let him watch just a little Elmo on TV.  And when he got sick, a little Elmo became a lot of Elmo.  And during the days prior to diagnosis, all Ari wanted to do was sit on the sofa watching his favorite Elmo episode.  I think Ari believes he and Elmo are BFF.

Since being in the hospital, Ari has become an Elmo collector.  He has:

An Elmo balloon,

 Elmo books,

 Elmo stuffies,

And...wait a sec...is that...could it be...how in the world...is it the morphine playing tricks on him...?

No, it's really him...ohmygawd...ELMO!!!

It took Ari a minute of initial shock to piece together who had just walked into his room and that he was standing next to his crib.  But once it soaked in, Ari smiled for the first time all day.  And then smiled again.  And again.  And eventually he reached out and touched him, held his hand, and clapped his fingers together with Elmo's big red furry fingers.  Ari was undeniably happy.  I melted.  I can only imagine how Ari felt.  (And how hot Elmo must have been.  It was only 99 degrees today.  From what I could tell, Elmo did not yet have his summer haircut.)

Ari has pointed to the door at least 10 times since Elmo's departure and said "Aya" (his pronunciation of Elmo.)  And each time, he said it with a smile.  Here's hoping tonight he dreams only of his visit with his good friend and not of doctors and hospital rooms and procedures.

(I'm fairly certain Elmo travelled from Sesame Street to the greatest toy and baby/kid gear store ever, Magic Beans, before learning of Ari's illness and coming to visit him.  A million thanks G's.)
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Daily update:

Thank goodness, this morning's lumbar tap came back clear.  That's 2 in a row!  We are trying not to be too optimistic as anything could still happen, but our fingers are crossed that Monday morning makes the 3rd and final test to indicate no more cancer cells in the spinal fluid.

Ari also had a feeding tube inserted during his trip to the operating room this morning.  Surprisingly, he has only futzed with it a few times.  I hope his weight stays steady or increases and they can remove it soon.  Truthfully, I think it bothers us more than him.

That's about it.  Same general malaise as the last few days - a lot of sleeping and a lot of chillin' in his crib.  (And one huge tinkle when Matt was changing a diaper.  Heh.  I was out of the room for it.  Bummer.)  Some agitation from the steroid (nothing a little Ativan can't fix) and some pain in his mouth.  Again, this is all normal and a result of very low blood counts and side effects of chemo.  By this time next week, we will be playing with the train set in the play room and going down the slide in the outdoor playground (I really really hope).

If you're trying to visit and we ask you to reschedule, please do not be offended.  We like to give our undivided attention to Ari when he's awake (and he's not so into many people these days).  But again, this should be temporary.

Goodnight. :)

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Day 16

Ari's vocabulary started to explode in the last 2 months. One day he woke up a talking machine and he knew the words for all of his basic needs.  Though sometimes tough to decipher, he was pretty good at articulating himself.  Since we have moved into the Motel 6North, his new words are indicative of his daily activities and his current needs and wants.

He very clearly says "doc-tor" every time someone in a white coat enters the room.  He asks for "s-ghetti" and "suh-sage" and "kickle" at 1am, 3am, and 5am.  And, he's even getting pretty good at saying "hee-moo-glow-bin" and "loo-kee-me-a."  (Okay those last two were a lie...just some not-so-funny cancer humor for ya.)

And there's his new favorite word of choice that he says at least 100 times a day.

"Move."

Can you blame him?  'Cause I can't.

We laugh (and sometimes take offense) when he gives this direction to those he loves...and those he does not love.  You want to wake him up at 3am to change his diaper?  "Move."  You attempt to squirt a laxative down his throat?  "Move."  You dare stand within 5 feet of his crib when he's the least bit agitated?  "Move."

Matt thinks he's become a tad "mean."  I think if either one of us were in his position, we would be a heck of a lot meaner.  (And our word of choice would be much more colorful.)  Until today, everyone chuckled when they were told where to go or not go.  But this morning we had a few visitors who were not expecting an angelic looking 19 1/2 month old to tell them off.  Ari looked at them, waved his right arm, and said "move move move."

And he was not clowning around. 
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Daily update:

First a bit of housekeeping.  We originally thought we would be here for 30 days (if all went according to plan) for Ari's 1st phase of treatment called Induction. We ignored the 2 weeks of the 2nd phase that are also in-patient which make this a 45-ish day initial stay.   In addition, Ari has a strange leukemia chromosomal twist which adds a 5-day stay immediately after phase 2. There is a chance Ari will have a few days in between phases to sleep in his own crib, but we are preparing ourselves for a 50-day stay. (It's not the summer or anything.)  That's the bad news.  The good news is three-fold: First, this means there are new slots on the meal train.  And the better news - as long as there are no complications or infections, this should be it for hospital stays.  Oh, and best of all, this gets us back home a few weeks before we buy Ari a little baby.  He loves babies.  It's the least we can do for him.

(BTW, one of these days when I have nothing much to report, I'll give you a run-down of the 2 years of treatment.  Many of you have asked so I'll try to do it soon.)

Tomorrow is a lumbar tap.  Fingers crossed for another clear report.  If the results are good, he will only have 1 more. 

Guess what?  Ari's viral infection is gone and he is now allowed to leave his room, play in the toy room, walk around, see other kids, and go outside.  He's not feeling up to any of that just yet, but the "in theory" aspect makes this exciting.

But oy vey - Ari lost another pound.  The doctors are suggesting a tiny feeding tube that goes in his nose and down to his tummy.  The only downside is that some kids are bothered by the tube at first.  Matt and I are 100% sure Ari will yank it right out of his schnoz (they claim this doesn't hurt).  But, we may give it a try anyway.  His nutrition is vital to the success of this process and we need to do everything in our power to get him back to a lean chubby mean fighting machine.


Hasta manana.

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Day 15

Ari smells bad.  And I miss his old scent.  It was a combination of Mustela bath products (definitely overpriced but totally worth it simply for the incredible aroma it left in his hair and on his little body), Dreft detergent, and then his natural odor.  Eau de Ari.  Delightful.  Delicious.  I used to sniff every inch of his little body after his nightly bath.  I wish I had bottled his scent and could spritz it on him now. 

Because when I hold him and kiss him these days, I smell disease.  It could just be the lack of fragrance in the air and in the linens at the hospital, or maybe it's the smell of medicine being pumped through his veins.  (It also can't help matters that he hasn't taken a real bath in over 2 weeks.)  Either way, I'm convinced I can smell the cancer on his skin.  And all I want to do is scrub him and wash him until he's squeaky clean and no longer full of toxins.

But I will have to wait a while before I have my sweet scented Ari back.  And that's okay...as long as I get him back.

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Daily update:

Not much has changed since yesterday.  We did receive confirmation that yesterday's spinal fluid was clear of leukemia cells.  HUGE accomplishment.  We need 2 more negative lumbar punctures before the little guy no longer receives the spinal tap 2x per week and we can check off that box under the category "remission."  Definition - No cancer in the spinal fluid, no leukemia in the blood blasts (we are getting there), and nothing in the marrow (they won't test for another 10 days or so).  Plus, blood counts have to rise to normal levels again.  Still optimistic, but not expecting this for 2 weeks.

In other news, we tried the oreo milkshake today.  No luck.  We did, however, add a few new foods to Ari's daily roster - avocado, gnocchi, and matzo balls.  The key is soft, bland, and easy to pick up himself.  Got any suggestions?

Oh...and Ari is pooping again!  And he's being silly!  Now we're getting back the Ari I used to know.

Finally, I love you all.  Your support has been truly amazing and overwhelming.  Your calls, notes, emails, texts, meals, gifts, offers, and most of all love have kept us smiling and kept us going through the very long days.  But please no more baked goods.  I can't stop myself from eating them.   Still on room precautions due to the viral infection...even our guest musician had to wear a mask in the room today:

(Ari wasn't so into him.)

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Day 14 (2 weeks!)

Ari has been a chunky monkey since he was 1 week old. The kid takes food very seriously and has never skipped a meal (hmm sounds a bit like me).   As he moved from infant to toddler, his baby fat started to disappear and muscles emerged, but he was still deliciously squishy. He had dimples in his elbows and his tushie (again, sounds a bit like me) and creases separating his hands from his forearms. His eating habits were healthy...as was he.

During the two weeks prior to his diagnosis, his appetite suddenly curbed, but we were told loss of appetite was a symptom of respiratory distress and another indication of asthma/pneumonia. By the time we got to the hospital, he weighed in at 30 pounds (down 1.5 pounds from his 18 month appointment) and when they weighed him yesterday, he had lost another 2 pounds.  I was surprised because his appetite has been stimulated by the 3x daily steroid, but the doctor explained that the body uses an incredible amount of energy to fight the disease, and therefore, every calorie he consumes is going straight to work and he needs more grub to fight the bad cells and grow the good cells.

So today we started a high fat, high calorie diet. (Sounds like what I've been on for the last 6 months..whoops.) The nutritionist dropped off one hand-out with easy ways to add extra calories to meals (extra butter, cream, nuts, etc) and one of the most salivating things I've ever seen...drum roll please...the Children's Hospital Boston Milkshake list. All I have to do is dial 5-FOOD from our room phone and Ari and his taste-tester Mommy gets hooked up with creamy deliciousness like:

1330 calories in one 12 ounce frozen drink?  Heck yeah!  If they want him to indulge, this is the way to do it.  I can't think of a better way to add some meat to his bones!  There's also the Oreo milkshake, Cappuccino milkshake, Creamsicle shake, and a whole variety of smoothies and freezes.  Let's hope he will drink them and enjoy them.

And then his milkshake will once again bring all the girls to the yard...
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Daily update:

While Ari slept the day away, we received a bunch of great news.

First, his morning lumbar puncture came back clean!  These are preliminary results but we are ridiculously optimistic that this means the cancer cells are no longer in his spinal fluid.  Even if the final results show cancer cells, we know the prelim results indicate they are almost all gone.

Second, we viewed a side-by-side comparison of Ari's chest mass from June 4 to today.  On today's image, the mass was barely visible!  Even the doctors said this progress was better and quicker than they expected.  The chemo melted the mass away.

Third, the bacterial infection is officially gone and Ari was able to have a new central IV line placed so there will be no more needles for (hopefully) a long time.

Although Ari does still have a viral infection (meaning he cannot leave the room and visitors are asked to stay outside his room), and though he is feeling all-around pretty lousy (and will for about a week), we know it is just another 7 days or so before his body begins to rebuild good cells and he will start to feel better. 

And since he slept all day, I'm a tad nervous he will be up all night.  So I'm gonna hit the sack. 

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Day 13

I have terrible hair.  In fact, my brother aptly nicknamed me AfroSue when I was 10.  Since the 7th grade, I have been chemically treating my tresses to take out the curl and the frizz and make it a little more manageable and a lot more attractive.  As an adult, I found a process that continues to work well for me, and with the occasional frequent blow out, I like to believe my hair looks pretty normal most of the time.  (Not this month, but I have a good excuse.)

I was sure Ari was going to have Matt's hair color and my hair consistency and the kid would be doomed for life.  But to my surprise, Ari has the most beautiful hair ever.  I'm not exaggerating.  It is blond and thick and floppy and straight (but with body!).  "Wow, he has amazing hair!" is a phrase we hear quite often.

And ugh.  I knew this post was coming but that doesn't make it any easier to write.  This morning, we found hair strewn throughout Ari's hospital crib and all over his pillow.  Even the slightest touch to his gorgeous locks made strands fall out.  As he was eating his morning pasta and pickles, we watched it fall from his scalp to his chin, get stuck in his mouth, and wound around his little fingers.  They say once it starts shedding, it only takes a few days until it is all gone.

So in order to make the falling-out process less itchy and less traumatic (for him), we took scissors to his precious mane and cut as much out as possible while he napped.  I hear every one's "words of wisdom" and I know it will grow back and I know he won't know it is gone (or at least I hope not), but this classic cancer effect makes me ache inside.  

This makes it real. 

Until now, he looked healthy.  He looked like everyone else on the outside of the hospital.  And he didn't look like everyone else on our floor.  But in a few days, he will look like a kid with cancer.  When we stroll through the garden downstairs, the people eating their lunch will know.  When we leave the hospital and go back to the park and playground, the other parents will know.  And when we're anywhere and everywhere, strangers will know.  I dread their looks, their whispers, their feelings of sorry for me and pity for Ari.  And I regret the looks I gave and feelings I had for other families in the past.   

But you know what?  If we're out of here, it means Ari is doing well.  It means treatment is working and he's on the road to recovery.  His baldness will be a trophy shining for all to see that he is running a race and coming in first.  I am and will be so proud of his progress and of our collective efforts.  I won't be able to stop the sad eyes and thoughts of others, but I will do my darnedest to ignore them.

And until the hair grows back, I may buy Ari this shirt.

Post-haircut (I know he looks sad, but it's only because he was waiting for his second lunch!  He still looks adorable and damn good looking.)

I think we'll save the hair for the scrap book:

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Daily update (it's only 3pm but hopefully this doesn't change by the evening):

GREAT news!  The last blood culture came back negative for the bacterial infection which means the antibiotic is working!  He will need 2 more negative cultures before they replace the permanent IV line but we are thrilled with these results.  His fever is gone and he is feeling much better.  He still is not himself and is spending most of the day resting (and eating and watching videos) but we are happy to see his spunk and humor returning.  He is once again flirting with every cute nurse and eating the noses of all of his stuffed animals.  His counts continue to improve and we hope it's just a matter of time before his blood shows no cancer and the good cells begin to regrow. 

Tomorrow morning is another lumbar tap (shucks) but at least this means they can do all pokes and pricks for the day while he's under anesthesia.

We are still in a "closed" room because of Ari's viral infection (they don't want it getting out to other kids) and because the bacterial infection still makes him extra prone to other bugs. 

We haven't changed his diaper in about 4 hours so I imagine we will be changing his sheets very soon.  Maybe I will do it this time as my father's day gift to the best daddy in the world!

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A post from Dad on his day

I was very surprised to receive the following post at 10pm last night with email subject line "can i do a guest prologue blog post?"  Of course Matt.  (And how did you type this out on the iphone?!)

I'm just warning you, this may be a tear-jerker. 
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"it's simply not fair."
"why is this happening to us?"

These are two phrases I am constantly repeating to myself.  The fact is, it isn't fair, and I don't know why we are suffering through this.   I don't know why it is that any family needs to suffer through such an awful experience.  I think the 'why' is something that may not be answered for years to come if ever at all.  However the fact remains that Ari has a disease many children each year are diagnosed with and he needs a strong and prolonged treatment to beat it and get back to life as we knew it.   The odds that this was going to happen to us were minuscule, but, it happened and now we need to deal with it aggressively.

I love Boston for many reasons, and although i knew the healthcare here was some of the best in the country and arguably the world, I was hoping to not experience it as we have.  I am grateful that we are in arguably the best hospital for Ari's specific condition and the team of oncologists, nurses etc are top notch.  Sidebar, I always loathed the fact that our healthcare premiums have been so high for so long but at the end of the day it's a policy I would prefer to pay into than receive benefits from, however the time has sadly come for those premiums to be put to work. One of the oncologists on our team estimated the cost of care for Ari over the course of two years to be in the seven-figure range and fortunately for us virtually all of those costs will be paid by our insurer ( my apologies to you healthy folk out there).  Anyhow I digress.  Luckily we live a mile away from the hospital, my family is a stone's throw away and JulieSue's family is a short plane ride away.  Our families have to this point and will continue to be critical in helping Ari through this process.

Ari is barely 20 months old and in no meaningful way capable of understanding what is happening to and around him and clearly unable to explain to us how he feels other than very rudimentary cues that we can pick up on by virtue of being mom and dad.  On the one hand it's a gift that he's too young to understand why he has drugs pumped into him practically 24-7, on the other hand I wish I could explain to him the reason why we can't go home or visit the park, or play in the pool and go to music class.  Ari is such an exceptional and active kid that watching him lay in the hospital bed compounds our agony.  I would give anything to trade places with him as I know JulieSue or any of our families would.

I've certainly never been a religious/observant person but to some degree i believe in the power of prayer and faith, perhaps out of routine, maybe out of desperation or obligation even, but now I find myself walking a tightrope on faith in general.  On the one hand, i am asking for help from above while at the same time wondering why something like this would ever be allowed to happen to my son.   He's a baby, what could he have possibly done to deserve this cruel fate?  This gets back to the whole 'why' thing which can drive a person mad and i am finding to be less and less  fruitful, though i imagine i will harken back to it repeatedly.  Cathartic as this is to vent my feelings, i want to also put things in perspective since we don't have to wander far from our room to see how badly many other families are suffering. There's a child younger than Ari that's been here 6 months already.  A boy Ari's age with sickle cell just had his spleen removed.   There are kids with a broad range of illnesses and I'm sure each one of these families find themselves asking "why us?".   Hopefully there will be a day when no family will need to ask that question to themselves, EVER.

In the last decade the two happiest moments in my life were marrying JulieSue and watching Ari be born, cliched though it may sound.  And with specific regard to Ari, every day with him is a gift that keeps giving.  There's nothing quite as amazing as him waving to me from the window when I leave for work in the morning, or us chasing one another around the living room, or playing in the park.  And oh how i bemoaned the fact that he'd want to walk outside just to sit there and watch the garage door open and shut, for hours that would amuse him much to my chagrin.  Now  I'd give anything to just sit there with him on my lap watching that darn door open and close.   None of us has a crystal ball, and I'm really scared of what the end result of all of this will be, but extremely hopeful that 5 years from now we will look back upon this as a trying time in our lives and a significant battle that Ari won and won decisively.

Daddy loves you.

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Day 12

I'm quite sure I'm the pregnant one, but Ari is the one with the food cravings.

He wants 3 very specific foods: 1. Chicken apple sausage to eat during his midnight sausage fest (I just made myself laugh), 2. plain pasta cut into small pieces, and 3. pickles.  I can sorta understand the first 2 because they're soft, bland, and easy to eat, but I don't understand the sudden pickle obsession.  Also, he's picky when it comes to his pickles.  They can't be round sliced hamburger pickles and they can't be too dill-y.  Rather, he'll only eat the somewhat sour spears (like the kind you would find alongside a hamburger) with the skin removed and then cut into tiny pieces.  He ate 3 with breakfast, 2 for lunch, and another 3 as a snack.  And he just ate a little cup full as a bedtime snack.

I'm sure the sodium isn't good for him, and it's not as if a cucumber packs much nutritional content, but the kid is sick and I will do anything to make him feel better.  Seems I'm in quite a pickle eh? 

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Daily update:

The high's: McDonalds for lunch, (it's pretty remarkable how a cheeseburger happy meal, fillet of fish, and chicken mcnuggets can make a mom and dad feel much better...and for the record, some of that was intended for the little guy, but since he only wants the above 3 foods, we decided it shouldn't go to waste), two long naps and a constant morphine drip (these were Ari's highs today), a steak and mashed potatoes meal delivery, and a reassuring visit from one of our doctors.  Oh, and it was day 2 of no emesis.

The low's: Ari has a bacterial infection which makes him feel miserable.  He has a fever and no energy and spent the entire day in bed.  But worst of all, they had to remove his surgically implanted line today because of fear that the infection would get stuck in it and then stay in his body.  It was replaced by a temporary IV and there's no guarantee how long the IV will last.  I'm crossing my fingers the antibiotics start working quickly and he can get a new line in the next few days.  But most of all, here's hoping he starts feeling a bit better by the morning. 

We are not sure yet how this infection affects the current treatment plan but the doctor did say that this type of thing is common, is treatable, and is just a nuissance. 

Thinking positive thoughts for my favorite little boy.  They've gotta realize he's a pretty big dill.

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Day 11

Ari is a peeing machine.  He's hooked up to IV fluids 24-7 and drinks about 16-32 oz of milk daily.  At home, I was used to changing 3-4 diapers per day (I probably should have changed him more often, but that's another story).  Now, we change a diaper almost every hour.  And if we don't, we get wet.  (Yesterday, I had to change my pants 3 times.)  And probably because he's not feeling well, Ari has a fit during every diaper change.  So today we wised up and asked for some pull-ups - easier on and easier off.

And like every request we make, within 10 minutes we were granted a box of size 5 pull-ups.  I thought they were pretty awesome.  Matt did not.  Check 'em out:

Front:

 Back:

Real men wear pink, right?  Wrong.  Matt refused to let the little guy wear the diaper.  (He also said no when the nurse suggested we put a sanitary pad inside the diaper.)  And he even made a joke when our doctor assured us the disease would not cause infertility that "if he wore the diapers provided, it would."  So we sent out Matt's dad in search of more manly pull-ups and...

Ta-da!  Mechanic?  Race car driver?  Construction worker?  Doesn't matter because as this pic shows...

...Ari is all boy!

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Daily update:

Another tough day.  Ari woke with fever (first fever he has ever had...like since he was born!) and cold symptoms so he is being treated as having both a bacterial infection and virus.  The bacterial infection is very common and expected but is cause for concern as the little guy has no way to fight infection himself since the chemo has wiped out all white blood cells.  The viral infection makes Ari a risk to the other patients on the floor so he is not allowed to leave the room for the time being.  In addition, both make him even more susceptible to outside germs and bacteria so his room is closed to the public.  We're hoping he recovers very quickly so we can have guests again soon.

And he's still not feeling well.  His tummy pain and nausea has definitely subsided (all food was kept down today - hurray!) but he's extremely tired and achy and if he could verbalize it would probably say, "Mom, wtf is going on?  I feel like sh*t."  He spent the majority of the day watching Elmo videos and sleeping.  We also think he has a mouth sore or two (common side effect) as he points to his mouth and makes a sad sound so we've been giving him morphine (gasp...a very very small dose) for pain and it helps (physically and emotionally).

Ari, say "morphine"...

Shabbat Shalom.

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Day 10

Father's Day is taken very seriously around here.  This morning, Ari made a card for Dad, we picked out a balloon to give him Sunday, and we even had a brochure of gifts delivered and were asked to select 3 to give Dad on Sunday.  I think Dad may read this post so I will wait until Sunday to share the gifts Ari chose for him. 

But on the topic of Dad, I want to share how incredible Matt has been since the moment we stepped through the hospital doors.  Here are just some of the daily tasks he has taken upon himself.  He changes almost every diaper, he makes the bed every evening, he cleans the room, and he keeps the nurses well fed and well sugared.  He fits his 6 foot 2 inch frame on a 5 foot 10 inch bed every other evening and he never complains. 

He is in the hospital every day and almost every night.  He has put everything else aside.  And he provides care for Ari like I never could have imagined.  He holds Ari in the operating room when they give him anesthesia, he invents games and distractions to keep Ari entertained, and he downloads new toddler-friendly apps daily for the Ipad.  He asks the doctors every possible question to ensure we have all the information we need, he researches the disease, and he advocates for his son.  He is strong and fierce and incredibly loving.  And he remains my best friend and support.  He is truly remarkable. 

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Daily update:

It has not been a very good day.  The morning lumbar puncture went smoothly but Ari woke up cranky and tired and spent most of the day feeling sick.  He is having trouble keeping food down but is still very hungry (okay, you want gross details?  After his 2nd vomit of the day, he tried to eat the just ralphed spaghetti and meatballs.  In his defense, it did look exactly the same coming up as it did going down), his tummy hurts, and he just doesn't feel well.  He was given a large dose of medication in his spinal fluid this morning which may be contributing to his general malaise.  It is also very possible that these are all side effects of the chemo medications and that he will remain feeling like this for much of the next 20 or so days. 

The good news is - Ari loves narcotics.  He had some happy juice this morning pre-op and he became a wobbly silly man.  I took a video (I just couldn't help myself, but I won't post it here...that would be even too much for me) of his giggling and rolling and loss of balance.  It was the only belly laugh Matt and I had today and I'm excited to watch it over and over tonight.  And, as the docs are trying to make Ari as comfy as possible, they gave him a small dose of oxycodon this evening.  As I suspected, he thoroughly enjoyed it and it made all the pain go away.

His numbers are still looking good, the cancer cells are depleting, the mass in his chest definitely shrinking and everything else is on track, but his ANC count (google it, I don't know what it stands for) is now at 0 which makes him very susceptible to infection for a week until his body begins to create new good cells. We are asking all kids, anyone who works with kids, or anyone who has even the slightest sniffle (or lives with anyone with a sniffle) to not visit this week.  And all visits should be quite brief so Ari can rest.  (Or just ask Scott our mealtrain deliverer from tonight...you probably won't want to stay long anyway.  Sorry Scott.)

And thanks for all of the emails, texts, and phone calls.  I read everything but have gotten very behind on responding.  I promise I will get back to you eventually. 

It's my night off so I'm outta here...

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June 13, Day 9, Treatment day 13

I dread the nights.

Days are packed with visitors, activities, meals, and procedures which keep us together and busy.  But the nights are long and lonely.  Matt and I switch off both because there is only one parent allowed to sleep in the room, and also because we know deep down it is good for us to get a good night's sleep, take a shower, and leave the hospital.  But I find going home harder than staying put in our cozy room.

Home doesn't feel like home anymore.  There are toys and a monitor and a beautiful nursery.  But there's no Ari.  There are no sounds of laughter or little feet going pitter patter, no humidifier running all night, no electronic toys making silly noises, and no gagging sounds when we drop a used diaper in the genie.  The floors are cheerio free, the coffee table uncluttered, and the stroller out of sight.  Home feels sterile and empty and lifeless. 

And the nights in room 616B are filled with signs of life.  The nurses come in hourly to check vitals, the machines beep when the medications have been fully administered, and the parents quietly commiserate with one another in the hallway.  But most importantly and satisfyingly, Ari sleeps.  He tosses, he faintly moans when the nurse changes his diaper, and occasionally he lets out a cough or a call for "Mama."  But he is here and only a few feet away from me he is breathing and his health improving.  He is alive.  In this room, I feel charged with purpose. 

Yet I cannot sleep.  I am awakened by the beeping and the door creaking, by my hips aching, and by my mind wandering.  I listen to the ticking of the wall clock and wait patiently for daybreak.  And I look forward to another day of battle.

But most of all, I envision the not-so-distant future when we can all leave together and go back to what feels like home.
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Daily update:

Health wise, today was uneventful.  Ari's numbers are steady and his belly aches less frequent.  He had a bunch of great visitors today including a short curly haired red head who put on an incredible puppet show in the shower (she's very creative), and a guest appearance from a great friend who has an awesome Halloween costume:

Our roommate was discharged this evening so we are crossing our fingers that we will have some extra space for at least a day or two. 

Tomorrow Ari has a lumbar puncture in the morning and then we may try to venture to the playground if he's feeling well after the procedure.

My chin is up.

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June 12, Day 8, Treatment day 12

Living in the Oncology Ward at Children's Hospital is a little like being on a cruise ship.  There's free room service, ice cream available 24-7, and an all-you-can-eat buffet. (And after a few days, the food all tastes the same and gives me indigestion.)  Plus, there are a variety of reading and computer rooms, play spaces, and resource labs.  We are offered movie nights, pizza parties, bingo, and many other themed events.  But most similar to cruising, there's a calendar of daily activities and entertainment and even a cruise director (but here they are called the Child Life Specialist) to keep us and our little one active and interested.

When I cruise, I love the daily print-out of events and carry it with me throughout the day so I can stay busy.  Matt and I are treating our stay here as if we're on a cruise and attempting to keep Ari engaged in as many fun activities as possible.  Here's the schedule for the month:

And a close-up of today's activities:

This morning, Matt and I painted footballs (Ari was too cool for arts and crafts).  Can you guess whose is whose?

After our nap, we will get our face painted and then check out the live music.  And of course we will grab some snacks later to keep us going til dinner.  I'm psyched for tomorrow at 11am - clowns are coming!

Now I know what you're thinking and you're right, a cruise has its drawbacks.  And here too the halls are noisy and crowded, there's always a wait for the elevators, there are tons of crazy kids everywhere you go, and the bathrooms are tiny.  Oh, and how did I forget?  Just like on a cruise, we're trapped...

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Daily update: (Clarification, we are on treatment day 12 because they count the steroid Ari was prescribed for "asthma" as the first 4 days of treatment, even though today is day 8 in the hospital.  I'll take it.)

Ari's counts are steady and his lumbar puncture report from yesterday good.  He's having some belly aching and we are trying to figure out the cause and then prevent pain.  He may be having some nausea as well as he's become an expert puker.  (Sorry roommate)  We gave him a bath today because he was beginning to smell and he wasn't too happy with this decision.  But, I could tell he felt better afterwards as he put on a peek-a-boo and honk-the-noses show for the nurses before falling fast asleep.  He received a dose of chemo (Vincristine) earlier today and so tomorrow he may be sluggish.  All in all, his attitude is positive and he does not realize he's sick.  His cough is almost gone and his breathing is back to normal.  He hasn't asked to go home once and seems happy walking the halls, driving his car, and playing with all of the new toys.  Fingers crossed this continues!

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June 11, Day 7

Our first 3 nights at Children's Hospital were spent in the ICU.  Ari was having serious trouble breathing and he needed to be monitored very closely.  Now, in no way am I saying I want to go back there for any reason ever again, but I will say the accommodations were pretty sweet.  The room was huge, the bathroom private, and there were two beds for the parents.  We had a large window and a private nurse and lots of TLC.  It was like the Ritz Carlton of hospital stays.

And just as we got used to things, we were moved to the Motel 6...better known as the 6 North Oncology Ward. 

We still receive great care, but we only have one parent sleeping bed chair cot bench and we also have a roommate and a roommate's temper tantrums and a shared bathroom.  But what we thought was worst of all, we have a terrible view.  Our room looks out at a construction site...and not a few blocks away or downstairs but rather, right next to our room. 

I was pretty bummed when I first saw this and realized we wouldn't see sunlight enter our window for 30+ days.  But as it turns out, this view is a toddler's paradise.  Ari can watch the construction workers, the ladders, and the little trucks moving all day long.  The workmen wave to him and show him their equipment and he's sad when they go home at night.  (This also made for one very long weekend.  We tried to explain to the little guy that they were Union but he did not understand.)

Here are two pics of Ari and the construction workers and Ari's awesome new hard hat (thanks Zayde).

Daily update:

Ari had a great day yesterday.  As promised, we were able to take him outside to the garden.  He loved the flowers and walking on the grass (particularly where the "do not walk on the grass" signs were located) and tried very hard to get in the fountain.  (He must know he hasn't had a bath in 7 days.)  Next time we go outside, we'll remember pants.

Today, Ari had a lumbar puncture and he did great.  He ate a falafel and hummus lunch immediately following surgery and is now taking a nap.  Well, to be more accurate, he's doing this.  His counts are all still steadily decreasing and the doctor told us today he is responding better than they even anticipated.  As I said yesterday, we expect things to get worse in the coming days and weeks as the drugs begin to take a toll on his little body. 

Thank you everyone for all of your love and support. 

(p.s. some of you emailed asking if the blog updates could be emailed to you, and yes, all you have to do is use the "follow by email" field on the left side of your screen and go through the steps.)

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From poop to platelets

For the past 18 months, I blogged about poop.  I documented my hilarious, vivacious, brilliant little boy.  I wrote about my perfect life with Ari.  Never in a million years did I think this blog would change from smiles to sadness, from funny to fear, from happy to hopeful.  But it has.

Because my son has cancer.

Just typing out these words overwhelms me with shock, disbelief, and immense sadness.  Yet this is now my reality.  So after some thought, I decided to maintain the blog.  I will blog to record the days, the procedures, the highs and lows.  And I will blog to keep you updated.  I can't promise I won't be inappropriate, vulgar, or sarcastic.  In fact, through the worst week of my life, my spirit has remained strong, my humor is still present, and my ability to cross the line still intact.  I will try to make you uncomfortable by making light of a serious situation.  It is how I cope.

So to answer a few common questions first:

1. How did you know he was sick?

Ari had a rattle in his chest for a few days and was having trouble breathing at night.  We took him to his pediatrician who diagnosed him with asthma.  She put him on a nebulizer/steroid regimen and told us to come back the next day.  24 hours later, his breathing was better and the doctor said she could hear pneumonia in his lungs.  She prescribed antibiotics.  7 days later, he was significantly better but suddenly the cough/wheezing returned and we called the doctor on a Saturday.  She put us back on meds and told us to come in Monday morning.  After seeing him Monday, she sent us to Children's Hospital for a chest x-ray to rule out an un-cured case of pneumonia.

And we haven't left.

2. What is the diagnosis and prognosis?

Ari has T-Cell Acute Lymphoblastic Leukemia.  He has a substantial mass of cancer cells in his chest which was causing the breathing problems.  In the childhood cancer if-you-have-to-get-it world, this is the one cancer you want to get.  The brief overview of treatment is: 4 weeks in-patient chemotherapy, followed by 2 years of mostly outpatient chemotherapy - 1 day a week for 2 years.  That's longer than he has been alive.  But here's the good news - there's a 95% chance Ari will be in remission after these first 30 days.  And an 85% chance he will be cured after 2 years.  And if he's cured, his chances of the cancer recurring or developing a new type of cancer is the same as any other person. Leukemia does not metastasize.  And we are at the best place for childhood oncology and we have the best of the best leukemia doctor.  And most importantly and most reassuringly, he has already responded extraordinarily well to treatment.  His white blood cell count was 180,000 when we were diagnosed.  Today, it is 2800.  This means treatment is working.  Doctors are highly optimistic.

3. What goes on during these first 30 days?

Ari's chemotherapy consists of 7 medications.  4 of the medications he has already received full doses and now we wait for them to work.  In addition, he receives multiple lumbar punctures (spinal taps) each week to administer chemo directly into his spinal fluid and to test for cancer cells in his spinal fluid and brain.  He will need 3 clear lumbar taps before these discontinue.  He also receives 3 doses of steroids every day for 30 days to shrink cancer cells. And, he will undergo radiation treatment later in treatment to destroy any bad cells in his brain.

4. What are the side effects of treatment?

Each drug has its own set of effects.  We expect to see side effects of the first 4 medications within the next week.  They have been giving him anti-nausea medication and so far, we don't think he's been sick to his stomach (he did over-eat last night and puke up all his food, but I should have known 3 steak tips, a chicken thigh, a scoop of mashed potatoes, 5 mushrooms, a bunch of vegetables, a popsicle, and a glass of milk would be too much for his little tummy.  I now know for next time.  Oops).  He has bruises all over his little body.  His hair will fall out starting next week.  He will be tired.  He may have mouth sores and skin sores.  He may be agitated and cranky and angry.  The steroid makes him ravenous and causes extreme highs and lows.  To date, we've only seen the highs and we see them daily.  Only a video could adequately do these highs justice.  He becomes a crazy man.  He sings and dances and jumps and talks and tickles and flirts and goes berserk.  Last night he had an uncontrollable laughing fit for 30 minutes.  The high lasted from 6pm until 10:30pm.  I laugh just thinking about it.  I hope we continue to have one every day (just maybe not so late at night).  

5. Will 30 days of steroid use cause his penis to grow?

I've asked every doctor.  They're not sure.  But I hope so.  He ought to get some benefit from this.

6. Will anything hurt?

Aside from the side effects of medication, he should not feel much pain over the course of treatment.  He has a surgically placed IV line which makes blood draws and medication administration painless.  He will have a central line placed in his chest and that will stay in his body for 2 years.  No needles. And, he is sedated for every procedure that would cause even the slightest amount of pain. 

7. How did he get it?

Bad luck. Plain and simple.  They've done research and more research.  It's not genetic and it's not caused by environmental factors.  It just sucks. 

8. How can you help/what do we need?

Everyone has been asking and we really appreciate it.  We are fine!  We have dinners coming for the next 30 days (the last 2 nights have been incredible, not sure how they will be topped!).  We have toys and books and not much more space in our (double) room.  Ari is blood type O+ if you would like to donate blood or platelets.  And if you want to dress up as Elmo and come visit, I'm sure he'd love it.  Other than that, your thoughts and prayers (and please no pity or sad eyes) are all we request.

There's so much more to report...like what this week has been like, what our stay in the ICU was like, what our room on the oncology floor looks like, how incredible Matt has been, how the outpouring of love and support from our friends has utterly and completely overwhelmed us, how we are really doing, how I feel to have a child with cancer and a baby on the way, how great our parents have been...but if I go through all of that now, you'll get bored and I'll be out of material.

So until tomorrow, here's our daily update - Ari is so happy right now.  He's already played with a train set, watched some Elmo, had a little breakfast, and taken a walk around the floor.  He will be getting some blood soon and then we've gotten clearance to take him outside!  Tomorrow we have a lumbar tap so today we will live it up.  He looks great, huh? 

Oh, and for the record, I'm still obsessed with poop.   And so much more in love with my precious little boy, the light of my life, the person I believe I was brought on earth to care for and protect.  He's a fighter.  And so are we. 

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