Heartbroken

I love Marathon Monday.

It's hard to compare Patriots Day to any other holiday or explain to non-Bostonians what it feels like to celebrate with my fellow city-men and women.  But I'll try.  On Patriots Day, I wear jeans and sneakers, I spend the day frolicking outside with family and friends, I eat hot-off-the-grill hamburgers and hot dogs, and I even drink a beer or two.  It's a day of fun and celebration and happiness and excitement and cheer.  And everyone, from young children to college students to moms and dads and grandparents, are outside enjoying the fun-in-the-sun together. 

I have truly great memories from the last ten Patriots Days that I've spent in this city.  And by far, my favorite part of the day has been standing along Beacon Street in Coolidge Corner or Boylston Street in Boston watching the Marathon.  It is a thrill to see the runners on the route, track my friends who are on the course, and cheer along the men and women who spent months training for the special 26.2 mile journey. 

But this year, the Marathon had added meaning for me.  More than just eating barbecue and spending the day with friends, I felt it was truly my duty to be there.  Thousands and thousands of runners raised money for a variety of charities, and I wanted and I needed to stand and cheer on my friends running for CJP and my "family" running for Children's Hospital and the Dana Farber Cancer Institute. 

The 12 runners who comprised Team Ari this past Fall may not have been participating in yesterday's race, but all of the other runners who raised funds to support the doctors and researchers and institution that will save my son's life were.  On Monday, they were all part of Team Ari. 

And from my perch this year atop Commonwealth Avenue in Newton, I waved and woo-ed and encouraged them all to keep going until the very end.  Fitting, I thought, as they were making it possible for Ari to do the same. 

After we watched the Elite men and women run by, Ari went home to take a nap, and I drove back to the course with baby Alison.  I felt myself get choked up as I watched the countless Dana Farber runners make their way past me.  Every one of them who saw my sign gave a smile, a thumbs up, or a wave.  And then there was the man who stopped to thank me.  Under my sunglasses, my eyes welled with tears.  I was standing there to thank him and thank all of them.  They don't know me or little Ari, but they were out there on a mission to keep my family alive. 

And yet, the eery, sick, horrific irony of the day was that it was these generous, selfless runners whose lives were threatened yesterday.  It was their friends and family and themselves who lost their lives, who suffered debilitating injuries, and who now lay in hospital beds and in surgical suites.  Yet Ari is outside today playing in the sunshine, digging dirt with his toy trucks, and running to see lawnmowers.  While I stay glued to the news on the TV, hoping and waiting for updates and arrests, he is unphased (as he should be) by the tragedy.  He is too young to understand.

I used to tell Ari I would never let anything bad happen to him.  And then he was diagnosed with cancer at the age of 19 months old.   I couldn't protect my baby from what I thought was the worst thing ever.  Yet, I learned quickly, that there are things that are far worse - medical conditions, school shootings, Marathon bombers, and more.  While I cannot make sense out of these random acts of terror, nor can I prevent them, I can and must continue to live my life, to enjoy my children, to celebrate blessings, and to complete our own marathon. 

I cheered on runners at the very top of Heartbreak Hill this year.  And I only wish for the runners, for their families and friends, for all of Boston, and of course for my own family, that it is all down hill from here.

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Where the heart is...

Let's play name the baby.  Ari (2 years ago) or Alison (yesterday)? 

 

Same cheeks, nose, forehead, thighs!  And both so stinkin' (literally) cute.  No doubt they're related!

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And, unrelated...

What a cold, wet, rainy day it is today.  It's the perfect day to sit inside, play with toys, and order in Chinese food.  It would be difficult to go outside in this crummy weather...even in Ari's stroller-bubble.  So for our family, today is definitely not a good day to be stuck in the hospital.

Then, it's perfect timing Mother Nature, because we're...

HOME!

And everything feels right again.  Two kids eating, pooping, and waking at exactly the same time.  And, two kids laughing, playing, and tickling each other (well, Ari tickles Alison) all day long.  Ya know what, I wouldn't want it any other way.  I love watching these two interacting, and more importantly, I am so glad to be with both of them again.

Thank you Ari for getting your ANC up so that you were sent home from the hospital!  And even though you keep asking very politely, my answer is no, we cannot go back there today and see the big blue ambulance and push the buttons on the robot and eat the chocolate ice cream.  I know you like it there and I'm glad you had such a nice get-a-way.  But next time, let's go somewhere warm, maybe with a swim-up bar rather than an-all-you-can eat milk and jello bar.  Cool?
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Counts are still very low (just not low enough to be incarcerated) so we'll stay in our home and/or outside in the fresh germ-free air til next Wednesday's clinic visit.  And guess what we start again on Wednesday?  High dose steroids!  Woohoo! 

But here's the silver lining.  This will be the *final* high dose steroid course before the dose decreases by 2/3!  And I gotta believe the new dosage will be much easier on Ari.  I hope he's happier (and less hungry) for this 1 out of every 3 weeks (for the next year and a quarter).

Fingers crossed for a healthy week at home! 

And thank you all so much for the ANC dances.  They worked!

It is so good to be home!

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Mission Possible

Let me set the scene.

We are on the Bone Marrow Transplant hall.  The air is filtered.  Visitors must wash hands before entering the first and second set of doors.  And nobody with even a sniffle is allowed onto the floor without head-to-toe plastic ware covering their body.  The kids in every other room have brand new immune systems and cannot be exposed to germs.  This is serious business.

Meet my son.  He is 2 1/2 years old, full of energy, always on-the-go, and has never been told hates being told "no".  And he has a viral infection.  He wants to run and play, but right now, he is only allowed to do so in his room or outside.  And, stubborn little fella refuses to wear a mask to walk the 50 feet to the elevator. 

After one failed attempt to force him to wear a mask (which ended with Ari kicking and screaming..and coughing...in the hall after tearing off the mask), we came up with a solution.  I would bring a full body mask, aka the rain cover on his stroller, to him. 

Hey there bubble boy:

Success!

Once we got him off the floor, we were allowed to go outside, roam the hospital garden, and play at the hospital playground.  But as Matt convincingly assured me, "rules are meant to be broken," so we took a leisurely stroll around the hospital property.  Err okay.  And maybe we took a gander off the property too...just a little.  No really...it was only 2 or 3 miles...max. 

And Ari, for the first time in days, was thrilled.

He saw lots of trucks,

 

Fed some ducks ("1 goldfish for Ari, 1 for duckie"),

Ate,

 

and drank.

 

 (oh c'mon, a grande frappuccino can't hurt him. Plus, it's Matt's night to sleep over. Heh heh.)

And (not pictured), he did spend a long time at the playground.

Seeing him so lively made me really happy.  I just hope he didn't have so much fun that he wants to stay another day (or two or three)!

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Come on ANC!  We need a 40 point bump tonight and then we can go home!!  Ari's white blood cells went up, his platelets went up, his monocytes went up.  And his ANC went down.  Dance, pray, sing, do whatever you need to do to get his ANC up. 

Thanks for all of the continued support and love!

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Married White Female

When Ari was admitted to the hospital last week, I was more than a bit bummed out.  I would be missing the biggest CJP event of the year, we would be unable to take our planned ski trip with other Jimmy Fund Clinic families this coming weekend, and I would have to cancel my first date with Jane.

Jane had asked me out over email.  Her cutie-pie daughter Clio is also in treatment for Leukemia, and Jane is a writer/blogger (like a real one...she's written books and stuff...and now you're all going to start following her blog which is fine as long as you don't compare mine to hers.  Remember, she's a professional.).  We had chatted briefly a few times in person and traded emails, but never actually hung out.

So when Jane asked if I would be interested in meeting for a drink or two, it sounded great.  The camaraderie I feel with fellow cancer moms is indescribable.  I figured we would drink, chat, laugh, and, most importantly, sob inconsolably commiserate with one another. 

Jane first offered to come to me.  Woah.  What kind of girl did she think I was?  I don't invite people over on the first date.  So we chose a central meeting spot and booked it on the calendar.  It was planned for Tuesday, April 9th.  Tonight.

I emailed Jane a few days ago to let her know I would have to reschedule as we were stuck in the hospital.  She was so disappointed that, ready for this, she found some germs and fed them to her daughter.  Can you believe it?!  And then last night, she checked her daughter in to the hospital!  Uh huh.  She even gave her a cough and a high fever to boot! 

I'm trying not to get too freaked out about this.  I should be flattered, not scared, right?  I think I'll give her the benefit of the doubt, believe her tale that "every one in her family is sick", and share my opened bottle of "apple juice" in the fridge. 

But I'll probably alert hospital security...just in case.  

(Feel better Clio.)

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As anticipated, Ari is not a happy camper being stuck in his small hospital cell room.  Yesterday, he had both a major freak out and an attempted break out.  Good times.

I brought his stroller and plastic rain cover with me today in the hopes we could make him mini bubble boy and take him outside without infecting all the other kiddos.

And I'm trying not to get my hopes up because... Ari's ANC tripled overnight!  It went from 50 to 170.  Only 30 more little neutrophil points before we can check out and go back home.  The doctors think the counts will probably dip down before they go back up but I'm feeling hopeful. 

Hugs and kisses everyone. (ANC dance por favor)

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In a pickle

 

When Ari's counts drop, so does his appetite. We see this at home every 3 week cycle. Week 1 he eats a tremendous amount of 1 specific food. Week 2 he eats like "normal" (veggies, fruit, pasta, protein, etc). And week 3 he stops eating. We used to be concerned but now we know the drill. He gains weight. He loses weight. Repeat.

With his counts at around zero (technically, his ANC is a whopping 50), he's not so interested in grub (and particularly what they offer through hospital room service).  The last two days, he not-so-calmly requested avocado sushi, edamame, and hot rice, and then only picked at and played with it once it arrived (thx J.J.).  But last night around 7pm, he announced "Ari's hungry" and then, surprisingly, sampled a wide variety of foods: Chicken finger, crackers, apple slices, chocolate ice cream, and a pickle sandwich.

Yup. He even made it himself.

Dinner of (neutropenic) champions.
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Ari has now been fever free for 36 hours!  YAY.  His cough is significantly better and he has no other viral symptoms.  But, we still must wait for counts to rise.  And most frustrating, we still can only be in the room or outside.

And to get from inside to outside, Ari must wear a mask...which he refuses to do (we tried yesterday and it didn't end well).   I feel so bad for the little guy.  He knows where he is and he knows there are play spaces and toy rooms and movie rooms and robots and halls and little babies and all sorts of other fun stuff to explore right outside his door.  But he can't go out there.  And he doesn't understand why he's stuck inside.  We're trying to distract him (as are guest puppet shows and new toys) but I'm dreading the next couple of days. 

And I'm taking suggestions for activities/distractions...and hoping for a count-rising miracle!

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Saturday Night Fever

I had planned to write a silly little story last night about the hospital engineer "fixing" a problem in our room:

But that became insignificant after what followed which I will call...

The Scariest Moment of my Life.

Here's how it played out.  Our head doc is on call this weekend so we feel very safe.  When he recommended an infusion of antibodies (immune globulin iv), we thought it sounded like a good idea.  Ari needs any virus-fighting help he can get right now. (If you want to read about the antibodies and how they do it, check out this site.  And a more complete Ari medical update is below.)

They briefed us on possible side effects and reactions from the transfusion, gave him some benadryl and tylenol to "pre medicate" him, and plugged it into his line.  It was going to be a 2 hour drip.  He watched 3 episodes of Caillou, I read an US Weekly, Matt went to get dinner, and then, an hour into the infusion, Ari made a funny coughing sound like he had a frog stuck in his throat.  Matt and I both jumped up.

And then within seconds, Ari was shaking uncontrollably.  I don't know how long it took for a swarm of staff to rush in, but it felt like forever.  Ari was vomiting and rigor-ing, his heart rate was through the roof, his entire body was covered in hives, and when they took his temperature, it was over 105.  They gave him a shot of benadryl in his IV line which made him very promptly... pass out.  

At this point, I remember shouting "something is wrong!" and the doctor in the room calmly assured us that "this was a normal reaction and within minutes he would be fine."  Again I shouted, "something is wrong!  do something!" and they were able to get Ari to respond (open his eyes, squeeze our hands, etc).  I am not sure how long he spent in this frightening eyes-rolling-back position, but it was long enough for me to, ahem, think the worst.

And then, suddenly, he sat up, looked at me, opened his little pink lips and said, "where's my front loader? get my truck."  Just like that, he was back.  In fact, he proceeded to have a bit of a manic episode (they think from the benadryl.)  It was like watching a toddler with ADD on speed.  He wanted toys and rocks and playdough and he was singing songs and drinking juice and tickling himself and poking the nurses.  I think he even had a laughing fit.  Then he asked Matt, "Daddy are you going to the office?" which prompted one of the nurses to ask if Matt works nights.  We all had a quick chuckle and shared a big sigh of relief.

(I'm pretty sure this is when I wiped away tears, allowed my heart to beat so fast the floor shook, and then chugged a bottle of gatorade to keep myself from fainting.)

When all was said and done, his fever was back to a more comfortable 102, he was given IV steroids to try to stop the reaction to the antibodies, and as a reward for the intense drama, we were moved to a new room (good thing because the Engineer didn't fix the issue).  We settled in, Ari dozed, and Matt and I enjoyed a much-needed adult beverage (thx C&B. And shh people, don't tell the staff).

Incredibly, his fever broke overnight and he was able to sleep comfortably.  In fact, he's still dozing now.

I'm going to take a quick shower since I can now smell myself.  (TMI?  Never...)

Hoping for an uneventful Sunday!

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OK more medical stuff, for those who are curious.

A little background as to why we are here... The protocol for kids with cancer is that anytime a child has a fever (above 100.4) they have to get blood cultures taken in the rare case that they have a bacterial infection.  If the kid has normal blood counts, they get a dose of IV antibiotics and are sent home, but if their counts are low, they're required to stay in the hospital until counts recover.  This is so they can be monitored around the clock, receive high-dose antibiotics to prevent bad stuff from growing in the body, and because there's a chance a fever signifies a bacterial (central line) infection  it could be a very bad scene if they send a kid home.

On counts - Chemotherapy makes counts (white blood cells, neutrophils, platelets, etc) drop.  On purpose.  It usually happens about 10 days after receiving chemo.  In Ari's case, he usually drops around day 10 and then his body takes 2 full weeks (sometimes longer) to recover and for his counts to go back up.  He had chemo on Wednesday March 27 (11 days ago).  The other two things that make counts fall - fevers and viral infections.  So Ari has the perfect trifecta of count dropping mechanisms.  This isn't exactly worrisome, it's really just bothersome.

What does this all mean?  Well, in short, that our stay here will not be short.  My guess is we'll be here for around 2 weeks waiting for Ari's body to produce cells so he can fight off his little infection.  (This was a heck of a lot easier before kid #2.  And before we moved to the 'burbs.)

We are now in a room on the bone marrow transplant hall because the regular Onc hall is full.  Ari is going to be on "precautions" for most of this stay because they don't want to risk him giving his viral bug to another child.  I don't blame them.  But, it's going to be pretty difficult to keep Ari happy and occupied once he feels better.  No toy room, no movie nights, no nothin'.  Hopefully we can take him outside and keep him busy looking at ambulances and watching construction.

We can have visitors (but very brief visits and no kids and only if people are 100% healthy and haven't been exposed to anyone unhealthy).  We are ok right now, have clean clothes and lots of snacks, and just hope Ari's fever stays down, his cough clears up, he feels better, and he grows some good white blood cells soon.

(We are in the market for a nanny type person to help out with the baby and maybe stay overnight for these 2 weeks.)

I'll continue to update the blog but hopefully only boring daily updates from now on!

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Wishes

I got some good stuff for my bday.

Cards, cake, gift cards, and...a trip away from home with Ari!

We're shacking up for at least a few days (probably more) at the all suite resort I've grown to (not) love - Children's Hospital.

We're back.

They call it "fever with neutropenia" or in other words "my toddler has a little cold and gets locked in jail for a while."

What do we need? The ANC dance. And distractions! They won't let Ari into the toy room or fun common areas for fear he may infect the other kids.  And because there are no empty rooms, we're in a non room room. So we need a window too.  In all seriousness, we just need you to pray that Ari gets better and gets his counts up. That's my birthday wish too.

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Be careful what you wish for

Cancer is expensive.

I'm not complaining, just explaining.  Between the parking garage at the clinic, the apple flavored compounded prescriptions (they have to make them taste good or else little A won't take them), and the fancy food cravings one week a month, a family can really feel the pinch. 

I was wishing and hoping that Ari would choose a food that was cheap and easy and filling for this steroid course.  And, you won't believe it, but he obeyed.  I'm happy to report, that since Thursday, Ari has gone through...ready for this...36 cans of (cold) spaghettios.  And 2 gallons of milk.

He ate them all day and all night.  He ate them in his crib and in my bed.  He ate them on the floor in the toy room and on the chair in the family room.  There's simply no negotiating with terrorists a starving 2 1/2 year old on high-dose steroids.

In total, the 36 cans cost about $40 dollars (they were on sale 10 for $10 at the Star Market).  That's like $6.50 a day.  Bargain!

But, our white sheets, Ari's light blue rug, and our entire family room is neon orange.  I think a few days of sushi would have been cheaper than next week's Stanley Steemer bill. 

Next steroid week, I'm hoping for white foods again.  Spaghetti-no.
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Tomorrow is a very exciting day.  It's time to celebrate!  We can have cake and ice cream and open presents and have a big par-tay.  Anyone know what it is?  It's some one's BIG day!

That's right, it's Ari's final dose of Asparaginase! 

This is a huge deal because it signifies the end of one phase of treatment and the start of another.  Yahoo.  I'll be at the clinic with Matt and Ari and I am psyched to celebrate.

Wait, what did you think I was referring to?

There's really nowhere I'd rather spend my birthday...

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