Rub a dub dub

It had been over 8 weeks since Ari last took a real bath.  I'm not exaggerating.  He received 3 sponge baths while in the hospital and 1 soap-less dunk in an inflatable pool.  But it was more than 60 days since his feet were scrubbed, his armpits washed, and his hair head shampooed.  I love him more than anything, but I did not love the way he smelled.

So after a little coaxing (I got in), Ari agreed to splash around in a bubble bath.  Once he was in, he was back to his old bathing self.  He even booted me out so he could enjoy the tub all to himself.   Much to his chagrin, the water got cold and his skin turned pruney, and we insisted bath time was over.  He did his best to convince us to let him stay just a little longer in the cool water.  He happily kicked his legs, sang a song, and washed his face.  And then, at the last possible minute, he did the one thing that would ensure a longer bath.  He pooped.

I should have known it was coming.  Watching him frolic in the water, he was truly like a pig in sh*t.
___________________________________________________________________________

Weekend update

One week at home and I have almost forgotten what life was like in the hospital.  Everything feels right again and we are back to our normal routine.  We even dined out at a restaurant Sunday night (early in the evening to avoid crowds and we sat outside to avoid germs).  Ari is eating well, playing well, and sleeping somewhat well (okay, he still wakes up multiple times per night.  I blame the IV fluids and multiple diaper changes for 48 straight nights.)

As Ari chants over and over again, all 3 of us are just so "hap-py, hap-py, hap-py." 

Today, Ari had a bone marrow biopsy (results tbd) and tomorrow, he starts a 5 day chemo protocol (immediately followed by a new 3 week phase).  We had made the choice to do these 5 days in-patient, but because home life is so wonderful, and because we live so close to the hospital, and as our hot shot doc told us today, "there's really no medical reason to do this in the hospital," we're going to remain at home.  We will go to the Dana Farber Jimmy Fund Clinic every morning for 5 days for a few hours of meds and checks, and then we will be free to go home.  If Ari has any negative side effects or if we get at all nervous, we can check into the hospital. 

As of this morning, Ari's blood counts were all stellar and nothing signaled the return of cancer cells (though the bone marrow will be a better indicator), so we can sleep easy tonight (who am I kidding?  between the peeing, the leg cramping, and the sweating...and Ari calling "mommmmmy" at 2:30am, I don't sleep much).

Most importantly, Ari's spirits are high and he continues to be so much fun, so funny, and so incredibly brave. 

Read more...

Feeling hot, hot, hot

I thought I would miss the room service, the Wednesday Treat Train, the Thursday Subway sandwiches, the Friday pizza party, and the Sundaes on Saturday.  But I don't.  Aside from all of the free food, I was sure I would miss the daily rounds, the doctors and nurses, the activities, the kids, and the famous people visiting (Gavin Degraw was there yesterday.)  Do I?  Nope, not in the least.  But now that we've been home for a few days, I realize there's really only one thing I truly miss about our home away from home... the always blasting air conditioning.   

The air was so cold in our room at the hospital that I had to wear a sweatshirt every day.  I slept under 2 blankets at night.  I even sipped hot cocoa in the evening to keep from shivering.  And I loved it!    Thankfully, we have central air at home and we keep our house pretty cool.  But now that we have control over our thermostat, and since we now pay the electric bill, the temp is set around 68 degrees.  This keeps Matt and Ari very comfortable.  But I sweat.  All day.  And all night.  I wake up shvitzing in the morning and am sticky in the evening.  Hot coffee in the morning?  Yeah right.  You try being 8 months pregnant in July.

There's really only one thing to do to escape this summer heat and humidity and get my hormonal (and huge) body back to a cool setting. 

Go back.
_______________________________________________________________________

Week update:

We are doing very well.  Ari had his first outpatient appointment at the Dana Farber yesterday and had his port placed today (temporary picc line out, permanent line surgically implanted under his skin where it will remain for 2 years).  He is spending a lot of time playing outside at the park and we are visiting the fire station multiple times daily.  His sleep patterns are still a bit screwy but improving.  He's eating and drinking and running and climbing and laughing and having a great time.

But just as we're getting used to things at home, we made the decision to start the next phase of treatment back in the hospital.  One of the new drugs has some funky side effects and though we were given the option to remain out-patient, we chose the safety and security of the doctors and nurses watching Ari 24/7.  We will go back Wednesday and should be out by Sunday or Monday.  5 days - piece of cake!

Mmm cake...

Read more...

Count von Count

We worked a lot on counting while in the hospital.  We counted the seconds it takes to clean the picc line tube (15), we counted backwards 3-2-1 for Ari's nightly diving routine in his crib, and of course, we counted the days it took until Ari reached remission (40) and until we could go home (47).  (All that practice, yet when Ari counts, it is always the same pattern.  He chants, "two, six, nine, ten!" and then proudly applauds for himself.  Way to go A.)

Now that we're home, I don't want to continue the running cancer count.  I no longer want to think about the number of days we spent on the Oncology floor or the hours we have until we are back in the hospital or the amount of time my innocent son will spend undergoing treatment.  Numbering the days until Ari is cured just reminds me of the overwhelming time and process still ahead of us.  I would much rather return to our old counts - the number of months Ari has been alive (almost 21), the number of weeks I am pregnant (32), the number of years Matt and I have been married (6 1/2), and most importantly, the number of days until my next birthday (253).  Today I resume counting all of the wonder, the blessings, the smiles, the laughs, the poops (2 today...both Ari), and the celebrations in our lives.  And that number may even be too numerous to count.
__________________________________________________________________

Daily update:

Today felt almost normal.  Ari and I played at the park, walked to the fire station, and ate ice cream outside.  Yes, we had two visits from nurses, and okay, I had to call the hospital twice to ask questions, and true, I flushed Ari's picc line (!) and squirted a little oxycodon in his cheek, but as I watched my son joyfully playing all day, I was able to put his illness out of my mind and just enjoy the warm weather and sunny company.

The rest of the week will not be as medically uneventful.  Tomorrow, we have our first visit at the Jimmy Fund Clinic for a check-up with the docs, and Thursday, assuming Ari's counts are all okay, we will go back to the hospital for outpatient surgery (picc line out, port in), but I can now envision how we will adapt to this unexpected hiccup in our lives and make it our new normal. 

It's so good to be home.  I am still scared (I stare at the baby monitor every 5 minutes like I did when Ari was an infant), Ari is definitely a bit confused (what happened to that huge amazing crib? and why aren't his parents sleeping in his room?), and I think we're both a bit lonely (he really loved the nurses, the activities, the kids, and the attention...now he's stuck with me... and I loved spending every day with Matt), but I know in a matter of days we will be back to our old routine.  (And oh yeah, we will be back in the hospital at some point soon for a little stay... just to remind us how good we have it at home.)

I'm off to sleep.  Fingers crossed Ari won't call for me tonight at 11pm, 2am, 4am, and 6am.  I missed sleeping next to him him last night as well, but I hope his old pal Benadryl will help him realize he no longer needs me three feet from his crib.  But of course, if he calls for me, I'm there in a heartbeat.

Read more...

Day 48

HOME

Read more...

Days 46-47

I'm a big fan of cocktail receptions.  A few passed apps, a carving station or two, and an open bar make me one happy lady.  So when my friend Ally and I noticed a cocktail party on the patio of the hospital garden, complete with bar, apps, dessert, and even high-top tables with beautiful florals and linens, I wanted an invite.

The hospital was celebrating the #1 ranking by U.S. World & News Report.  Way to go BCH!  The 4 of us proudly posed with the sign announcing the news:

Then, I "jokingly" asked one of the invited guests if we could have a nibble and she said all were welcome.  Music to my ears!  So we sampled a little of this, a little of that, and had some sparkling grape juice... and even Ari got in on the free-food action (note the lawnmower he brought to the party.  He works for food).

We may have crashed the hospital party, but it felt good to be part of the celebration for this incredible place.  On the eve of what we think is our last night here for a while (wait, did I just spill the beans?), I feel very thankful for the amazing docs, nurses, staff, and medical advancements that have made our time here enjoyable (seriously, Ari is really happy being here!), and most of all, life saving.  Every time I kiss and hug and squeeze my most prized possession, I am reminded of how lucky he is to be alive and how these incredible professionals have devoted their lives to keeping him alive. 
____________________________________________________________________
Daily update:

So here it is.  I think we may go home tomorrow.  Ari is fever free.  Rash free.  Cancer free.  Now we just gotta keep it that way.

It's not all great news.  The little guy has developed mucositis from the last dose of chemo so he wakes up in pain and doesn't want to eat (think bad canker sores in his mouth and throat).  We are giving him pain meds and hope that the sores heal quickly.  But, the hospital won't keep us here just for a little mouth pain.  As scary as it may be (especially given last week's attempt), I think we are ready to leave the safety of the 6th floor and go back to our own home. 

Our preference would be a trial run tomorrow for a few hours to make sure Ari is 100% fine.  Maybe this will happen, or maybe we'll just check out and go home.  Either way, we know we are in good hands (we have a visiting nurse and appointments at the Jimmy Fund Clinic).  And we know we'll be back in a few weeks (hopefully for our final in-patient stay and it will be much much shorter than this initial one). 

I can't believe I'm going to relate my real life to the Bachelorette, but as I type this, I'm watching Emily say goodbye to Arie.  I'm only sad because he had a cool name (though I have a brother Jeff so I really could go either way).  But as Emily kicks Arie off the island, the docs are kicking us off the oncology floor.  I think both Ari/e's will be better off without the bright lights and chemicals (hair dye...chemo...I couldn't think of anything else). 

I'm excited and petrified.  I can't imagine not having the "nurse call" button 24-7.  I am not sure how we will eat without our morning delivery of eggs/oatmeal/potatoes/fruit/pancakes/hot dogs (did "room service" really believe this will all for a 20 month old?).  And I don't know how I will sleep in a different room from my baby boy.  (I probably won't for a while.)

Anything could still happen.  At this point, 47 (!!) days in, I'm fine either way.  I know we all need to get on with our lives.  So wish us luck.  And, maybe my next post will actually be from h-o-m-e!

Read more...

Day 45

You know how sometimes I write about things just to be funny?  Like when I said Lea Michele came to visit us in our hospital room?  And then many of you believed me so I had to clarify in a subsequent post that I was being silly and our doctor du' jour just happened to look a lot like the Glee star? 

Well, to preface this post... what I write tonight is 100% true.  No joke.  I am not bullsh*tting you... this time.
______________________________________________________________

When Ari was first diagnosed, I asked when Miss America was going to visit.   I was being sarcastic. And she came a few days later.   Unfortunately, we missed her due to a spinal tap.

But today, I forgot all about the beauty queen.  Because this morning, we hung out with Chris Rock and Kevin James.

Fo' real!  As in, the Chris Rock and the Kevin James - the famous people, the actors, comedians, and co-stars of one of my all-time favorite movies Grown Ups (this fact can't surprise you).  They were doing a little do-good-ing today by reading a few books to the kids with cancer. 

When we were alerted to the 10:30am gathering, we quickly dressed (even Ari put on real clothes which has only happened twice in 45 days), applied deodorant (famous people make me incredibly giddy and then I have a tendency to sweat), and made our way to secure front row seats in the designated location. 

And, right on time, in walked the two actors.  Chris Rock was taller and skinnier than I expected.  Kevin James, was, well, if I'm being honest, shorter and fatter.  But both were incredibly warm, funny, and genuine.  They read two books to the kids, signed DVDs of Zookeeper, handed out Madagascar coloring books, and then took a few pics with the patients.

Speaking of patients, Ari did not have much patience during the book reading.  He listened for a little, shouted "book" at least 20 times at Chris Rock, and then squirmed off Matt's lap and walked around the room.  In this photo, as every other child is listening intently to the story, Ari is fixated on Chris Rock's converse sneaks and on a pink plastic duck he found on the floor.  (But he was unusually quiet so he didn't distract from the men.  Plus, when you have cancer, nobody cares if you're paying attention to movie stars.)

All three of them behaved for this snapshot:

(Ari was thinking to himself, "Put me down weirdos.  Stop taking pictures.  And why is this guy so bone-y?")

When Ari started asking them for food, we thanked the two guys and left in hysterics.  Perhaps Ari won't be obsessed with movie stars like his mommy. 

I hope his sister is...
____________________________________________________________________

Daily update:

I'm not going to tell you anything that happened today or anything that may happen tomorrow because every time I write with really good news relating to checking out of the motel6 north, it doesn't happen. 

Instead, I'm just going to tell you that we had a good day (obviously!  we met movie stars!) and are hoping for a great weekend.

Read more...

Day 44

When Matt and I took our first trip to Las Vegas, we rented a convertible to drive to Lake Mead.  Matt liberally applied sunscreen, we put the top down, and began the 45 minute drive.  After approximately 7 1/2 minutes, Matt stopped the car, had a mild freak out, and exclaimed, "I'm getting a sunburn!" and quickly put the top up for the rest of the drive.  I thought he was crazy.  And exaggerating.  But, in fact, he did get a sunburn.  As did I.  Yup, we are both burners not tanners - a match made in SPF4000 heaven.

Ari did not get the "skip a generation" skin tone gene.  He's just as pasty white as the two of us.  And, he tried to pull a fast one over on us two days ago.  While we thought he was taking a nap in the hospital room, and as we were busily packing up his room to go home, he snuck off to hit the beach and get his first summer sunburn.  Like any good sunburn, it took a few hours for the crimson to appear, but by midnight Tuesday, he was one hot tamale (scalp to toe...did he go skinny dipping?!).  And, that skin of his stayed smokin' hot and bright red all day long.  It even itched so badly I had to cut his fingernails at 1am (which broke hospital rule #1...but a mom's gotta do what a mom's gotta do!) to prevent him from hurting himself.  We tried prescription cream, benadryl, and even a mild steroid, but he was still as crisp as a piece of bacon. 

Obviously, this was Ari's way of telling us he wasn't ready to go home.  So we let him come back.  Now it's 36 hours later and the redness is getting significantly better and fever finally down.  But too bad for him, the burn is not turning to tan. 

I hope the little guy doesn't get skin cancer from this.  Oy.  It's not funny.  I know.
____________________________________________________________________
Daily update:

First, I know my blog timing has been off and I will try to get back to my 10pm postings.  But no guarantees!  If I don't post at night, please don't worry.  We just haven't yet returned to our normal routine.  

So we're back in our old room but we now have a roommate.  It's our second roommate in the last 36 hours.  The first one was 16 and I heard him telling a friend, "I have a roommate.  He's 2.  Yeah, I know.  Diapers.  Could my life get any worse?" and I had to chuckle.  That kid went home yesterday at 7pm and by 8pm, we had a new little boy who I estimate is around 10 or 12.  I can't complain (his dad snores, the tv is loud, and they turn the lights on early in the morning) because we were roommate-free for 37 days and now the floor is totally booked.  Plus, my red hot toddler enjoys the company.  (And as my saint-like husband reminds me often, all of these kids are very sick.)

The rash is getting better and Ari seems more comfortable.  They think the rash is an allergic reaction from one of the anti-biotics he was taking, so they've switched him from two hard-to-pronounce medications to two other even-harder-to-pronounce ones.

The fever (which is what brought us back in the first place) is unexplained.  The good news is nothing grew in the petri dish so it's not a bacterial infection in his blood.  The bad news is they have no way to pinpoint the cause of it.  Maybe it's just a virus, maybe a chemo reaction, or it could be something else.  If the fever had cleared immediately, they would have sent us home again.  But because fevers are red flags in the cancer world, they will keep us here until he is fever free for 48 hours.  The really bad news is that the chemo Ari received last week will cause his counts to drop in the next few days, and with low counts, it will be very tough for Ari's body to fight off any sort of bug.  This may mean he has the fever til his counts recover.  As you may remember, we are scheduled to start phase 2b in 2 weeks, so we may just be stuck here until then... with no week/s off at home. 

So yeah, we're bummed that we packed up our room, our snacks, our clothes, our toys, our books, our air mattress, and 42 days of stuff (this was just 1/2 of it),

but we would much rather be here than home if Ari isn't feeling so hot.  (Well he is feeling hot.  You know what I mean.) 

102 fever, itchy rash, yet still lookin' good...

Read more...

Day forty freakin three and a half

I had a really clever way that I was going to post an update last night. From home. Because we were discharged. We packed up, we signed some forms, we walked into our home, we played in the park... And then we got a high fever. And a rash all over our little body. And we are back in our room on 6north (but with a roommate). So ugh. They think both fever and rash are side effects from the chemo and hopefully will clear soon. All of our stuff is at home so I'm typing this on my phone and will keep it short. Will update ASAP.

Read more...

Day 42

I never understood why some Jews say "b'sha'ah tovah" to an expectant mother, rather than "mazal tov" or "congratulations."  The hebrew roughly translates to "all in good time."  It seemed to me a strange way to celebrate the mom and baby to be.  But over the last 6 weeks, I've come to understand this phrase in a new context.

At this point, there's nothing I can do to hide my almost 32-week pregnant belly and no matter how hard I try to ignore the constant somersaults inside me, I know something is growing in there and its arrival is inevitable.  When Ari was first diagnosed, I thought to myself, "My kid has cancer and I'm going to have a newborn baby.  This has to be the worst timing ever."  When someone would say "b'sha'ah tovah" I wanted to roll my eyes.  (I still try not to think about the not-so-distant future of sleepless nights, blowout poops, and crying/swaddling/spitting/feeding... combined with chemo and clinic visits and lumbar taps and radiation... oh and the pushing/delivery/bleeding/aching/not-fitting-in any clothes for 6 months til I shed the brownie weight). 

But maybe, the timing is not only good, but life saving.  As it turns out, if Ari needs a bone marrow transplant, there is no chance a parent or grandparent or aunt, uncle, or cousin could be the donor match.  The only relative that has a good chance for being a perfect match is a sibling.  And, the easiest and safest way to harvest donor marrow from a sibling is through cord blood.  The odds of needing cord blood are ridiculously rare (less than getting childhood cancer) but in a situation like ours, it makes sense to spend the bucks to save the cells.  And, get this, Viacord pays 100% for cord blood banking if the baby has a sibling who has a diagnosed illness like Leukemia.

So this baby who, I hate to admit, I tried to pretend was never going to arrive, may end up saving Ari's life.  And even if Ari never needs a transplant, I believe the baby will be Ari's pride and joy.  She will provide him (and us) with an exciting distraction from medications and procedures.  She will give Ari an opportunity to feel successful as he pushes her in the stroller, feeds her a bottle, and helps to change her diapers.  And he is going to thrive as a big brother.  I know this feeling of importance and purpose will help him immensely over the next two years in treatment. 

Now-a-days, as I walk through the hospital and people look at my big round belly and say "congrats", I respond, "thanks, all in good time."  (And I'll just hope "good time" isn't any earlier than my due date!)
________________________________________________________________
Daily update:

Again, I don't want to jinx it, but Ari's methotrexate level today was .07, down from 38 yesterday, and it needs to be 0 before we are cleared to go home.  We're basically there.  He has no side effects from the chemo, his blood counts are all really good, and he is feeling great.  They even took him off belly infection meds today.  And, I shouldn't say it, but they told us to prepare to be discharged... tomorrow.  We met with the home health care rep and the head nurse who prepped us for our release.  And we received another tutorial on how to flush Ari's IV at home.  He won't need any IV meds but we have to ensure the line stays open and clean.  This would mean we could all spend 2 weeks and 2 days at home before returning for the next phase (which should only be 5-8 days in the hospital... c'mon that's like nothing!).

I made a few calls to get the house cleaned and carpets washed.  Once we do a quick grocery and Target shopping for some basic necessities, we'll be ready to pack up and leave.  I'm both petrified and on-the-edge-of-my-seat excited.  It is very possible we will wake up tomorrow morning and Ari's counts will be low or the med level not yet at zero and we will be here for another day or two (or fourteen).  Of course this all happens the day after we schlep the air mattress in to the room...too bad we didn't bring it in weeks ago.

That's my update.  I'm gonna go make some microwave popcorn to watch during the Bachelorette tonight.  Obviously, I'm rooting for Arie. 

Read more...

Day 41

Sleeping in the hospital has been challenging. Because we haven't had a roommate for the last few weeks, Matt and I have both been spending the nights in Ari's room. At this point, we are so accustomed to our routine that it's difficult to even consider the idea of leaving Ari and sleeping at home. Though we want to be here, it doesn't make the accommodations any more comfortable. But today, Matt went home to "run an errand" and came back with the deluxe heavy duty queen sized aero bed.  Check it out!

If Ari doesn't wake up every time they take vital signs or change his diaper, and if his IV pumps don't beep all night long, we may actually get a comfortable and restful night's sleep.  And of course, it will be great to be together in the same bed again. 

Should I warn Matt about my bad gas or let it be a surprise?
_____________________________________________________________________

Daily update:

24 hour chemo drip is complete and Ari's blood counts are lookin' good which means he's processing the meds well.  It is tough to keep him hooked up to the IV all day long but we have managed to keep him occupied with a wide array of toys...

...and we were even able to take him outside a few times today (once with the big clunky IV pole, once without).  Other than a little nausea, he seems to be feeling great, and I'm praying that he doesn't get a high fever or bad mouth sores in the coming days. 

Dancing tonight for a quick clear of the methotrexate...

Read more...

Day 40

Today we made a new friend.

Meet Chester.  (Get it?  Chest-er.  It took me a while.)

Chester has a picc line in his right side (your left).  That's basically what Ari has now but it comes out of Ari's arm.  And in a few weeks, Ari will have a central line placed in his chest that will stay surgically implanted for two years.  It will look like Chester's left side (your right).  Nothing can be seen.  So Ari will be able to play/swim/bathe as normal.  Pretty cool, huh? 

During our central line 101 tutorial, Matt asked if they had a female version of Chester.  Typical.  The nurse took him seriously.  Typical. 

Then this happened...lookin' good honey! 

Do you think the nurses will let me cuddle up with Chester tonight?______________________________________________________________

Daily update:

The 24 hour chemo started at Noon so we were able to take Ari outside for the morning.  The day wasn't nearly as long as I anticipated.  Ari had some lunch chips, a long nap, and then played all afternoon in his crib.  I think the meds have him feeling a bit off (not that I can really tell since he's still awake and having pretend phone conversations with his stuffed doggie at 9:55pm) but it made it easier to keep him inside all day.  He will still be hooked up through tomorrow morning and then we just wait for side effects to appear (yuck) and the medication to clear from his blood (yay).  Once it clears, we can talk discharge again.  

I refuse to even think about the kids who clear the drug in 4 days.  I will expect Ari to take 3 weeks.  I'm not gonna jinx anything.  In fact, I'm starting to like it here.  The diapers are free.  The scrambled eggs are pretty good.  And the cleaning people are here daily.

C'mon clear the drugs in 4 days puh-lease.

Read more...

Day 39

(Sung to the tune of "Tradition" from Fiddler on the Roof)

Remission, Remission. Remission!
Remission, Remission. Remission!

Who, day and night, must live in the hospital,
Get his counts and chemo, do his daily dances?
And who made it here, as master of the crib,
To get the final word today?

The Ari, The Ari.  REMISSION!

Who was told the way to beat this bad disease,
A clear blood, an empty marrow?
Who thought it would take
forty days and nights?

 The Ari, The Ari. REMISSION!

At 9, he got his Lumbar punc,
At 10, bone marrow tested
We hear they are both cancer free.
I hope this remains.

The Ari, The Ari. REMISSION!

And who now starts new meds
to mend and tend and fix,
Preparing to rid him of
this horrible disease.

The Ari, The Ari. REMISSION!
_____________________________________________________________________

Daily Update

See song lyrics above!  Bone marrow biopsy CLEAR.  Spinal fluid CLEAR.  Blood CLEAR.  He's in REMISSION!

How will we celebrate?

In a few hours, Ari will have cocktails!  That's right, a bunch of different concoctions and a 24 hour continuous drip of something off the bar menu called high dose methotrexate. (Google it, but no need to tell me what you find.) 

The worst part of the next 24 hours?  Ari won't be able to leave the floor, but because of his lingering tummy infection, he cannot leave the room (because he could infect a kid with a compromised immune system).

So if you want to visit us tomorrow, we would love to see you (if you and your family are 100% healthy) but you have to bring some sort of entertainment (a musical instrument, an art project, something silly, a clown suit, finger paints, some workmen, etc etc etc).  Ari wants to be outside whenever he's awake so I don't know how we're going to keep him busy and happy.  Email me to coordinate.

Even though we're anticipating a looong day and then some nasty side effects for the remainder of the weekend and week, we couldn't be happier.

Have a wonderful weekend!!!  Thanks for all the love and support!

Read more...

Day 38

I see a lot of interesting stuff at the hospital.  There are things that make me happy - like watching the 16 month-old who has been on our floor since January pack up his stuff and go home.  There are things that make me angry - like seeing the insanely large number of parents and staff who light cigarettes as soon as they exit the hospital doors.  There are things that make me feel lucky - like feeling the love we receive from family and friends.  And there are many things that make me smile - like watching Ari eat chocolate ice cream in bed at 9 o'clock at night.

But for the first time, I saw something that made me question this "world class" institution.  I ran the gamut of emotions when I walked by this disturbing scene.  I was outraged, saddened, mad, and scared.  I wouldn't have expected something like this in Boston.  I think I would have been shocked to see it even in the South.  And to make matters worse, this happened in the middle of the day and in a very public space. 

I quietly documented what I witnessed.  Out of fear, I ran by quickly so that nobody could place me at the scene. 

This is what I saw earlier in the "Patient Entertainment Center":

Should I report this?!  Does the Grand Wizard have a great grandkid here?
_______________________________________________________________________
Daily update:

Ari's counts are all in normal kid range.  His ANC is at 4000 and his white blood cells and red blood cells and platelets are healthy high.  As the docs promised, this means we test the bone marrow one final time to ensure no leukemia cells have grown, Ari receives a lumbar puncture to double check his fluid is still clear (and simultaneously receives a nice large dose of meds), and then assuming all looks good, we begin phase 2 of treatment.  The fancy name is Consolidation 1. 

The tentative schedule (barring no fevers or sudden drop in counts) is tomorrow morning (Friday) will be the BM & LP and then either tomorrow night or Saturday morning the chemo begins.  This phase is going to be yucky.  The medication causes some ugly side effects and Ari may feel awful for the first week.  And then, once again, we wait for the meds to clear and his counts to rise, and maybe, just maybe, we'll have some time in our own beds before returning for the next phases of treatment (and these should be relatively quick and then we're done with the in-patient portion of the 2 year process.)

I don't want to get ahead of myself, but this is the current plan.  I will update you tomorrow evening after we receive results from the morning's biopsy. 

Have a good night!

Read more...

Day 37

Matt and I love the musical "Rent."  We saw the show on Broadway many times.  We travelled around the country to see many of the original cast perform on one final tour together.  We even first-danced to a song from "Rent" at our wedding. 

So when the hospital's "music therapists" visited our room a few weeks ago and asked for requests, we jokingly asked if they knew anything from our favorite show.  They smiled and said they would learn one song and come back the following week to perform it. 

And they weren't joking.  This week, we heard Seasons of Love, performed by Bryan the Berklee College professor and Noel, the Berklee student (I think).  Because of Ari's infection, they had to wear protective gear, yet still managed to play guitar and serenade Ari with their beautiful voices and music and the song's message.

Not to get too metaphorical or emotional here, but I can't help but note the similarities between the story of the cast of Rent, and the children and families who are struggling through a dark period of time yet finding comfort and encouragement and the will to overcome through their relationships with friends and family and one another. 

We have only been here for half of one season, but I know that our journey ahead will take us through the leaves changing, the snow falling, the ice melting, the flowers blooming, and the humidity rising.  And then we will repeat the seasons rotating again and again.  And as we count the days and months and years, we will measure the time in jokes, in laughs, in hugs, in firetrucks, in playdough, in Elmo dolls, in meals delivered, in cookies, in balloons, in inches grown, in new words spoken, in friends visiting, in emails, in texts, in new teeth, in greeting cards, in smiles, in babies, in experiences, and in happy times together.

There truly is no day but today.  We will savor each second, and most importantly, we will measure this time in our lives in love. 
____________________________________________________________________________
Daily update:

Will you even believe me when I tell you that Ari's ANC count went from 30 on Monday to 190 on Tuesday to 1500 today?

What could it possibly be tomorrow...a million?  I'll let you know.

Love,

Read more...

Day 36

Session 2 of Camp Gold Marrow started today.  We woke bright and early for reveille, we had a yummy breakfast of eggs and hash browns, and then we had instructional swim. 

Zayde coordinated the swim lesson by bringing the camper to the pool:

Then both grandfathers made sure the pool was in working order, the water level sufficient, and the temperature warm:

And finally, after much anticipation, Ari jumped in the pool for his private lesson:

He kicked and splashed and even dunked his face.  He'll be at the next Red Cross swim level in no time.  We'll have instructional swim and/or free swim at least a few times a week so he's ready for the 2032 Olympics.  (Or, in the meantime, just so he bathes regularly.)

And if all goes well, Ari will be out of the infirmary and back in his bunk by the end of the session.
___________________________________________________________________

Daily update:

To all of you dancers out there, thank you.  Ari's ANC count went from 30 to 190 overnight.  I woke up to this:

It still needs to increase to at least 500 before we retest the marrow and then start phase 2 of treatment.  Tonight, Ari begins a daily medication to boost his numbers.  But who needs meds when I have all of you shaking and shimmying?  I am optimistic that his counts will be up by the weekend and chemo round 2 can begin early next week (that's the bummer, but we gotta do it!).  All this waiting is giving me angina.  (I don't even really know what that is but I've always wanted to say it.)

We also received final bone marrow results which were the same as the prelim from yesterday.  If you skipped a day, here's the gist - the marrow was clean. 

Thanks again everyone. 

Read more...

Days 33-35

A note from Ari:

Weekends at the hospital are so boring.  There aren't many doctors roaming the halls, the activities aren't nearly as fun as on weekdays, and most of the other kids aren't here (well, the kids on my floor are always here).  I complained to my parents on Saturday morning and begged them to arrange something fun to make the time pass quickly.  And guess what?  Because they're the coolest folks in the world, they ordered trucks and dirt and diggers and workmen and even a fire engine to entertain me all weekend long!  (And I thought everything my mom ordered was from Amazon.)

A few photos from Saturday and Sunday:

Here are some workmen digging up the road and making huge piles of dirt.  I'm trying to feed them pretzels but it wasn't time for their break:

They made a gigantic hole and filled it with dirt and cement:

Then the fire department came because one of the workmen caused a little leak.  And they let me drive the firetruck!

Then the leak created a huge puddle so I jumped in it over and over and then got so excited I put my hands and tush in it (Mom didn't get a picture because she was too worried about my IV line getting wet so she rushed in and made me get out...what a buzzkill).

So as you can see, the weekend was awesome.  (Plus we had a bunch of fun visitors and good food!)  But I need you to make me a promise...please don't tell your friends about my little adventure or else my parents will get in trouble.  If anyone asks, we were in the hospital garden the whole time, ok?

Love, Ari
________________________________________________________________________
3 day update:

Please don't be mad at me, but I kept a little news from you at the end of last week.  As we were patiently waiting for Ari's blood counts to rise to normal numbers, our doctors decided we should test Ari's bone marrow again to see if the cancer was growing.  As you may remember from last week, the last biopsy was clear (there's a bit more to this...like under the microscope, they couldn't see any cancer, but when they performed a FISH test, they could detect very teeny tiny residual amounts of cancer cells, which worried us because they weren't starting phase 2 of treatment right away and we would have to test again to see if these little bits became bigger bits.) 

So the test was scheduled for this morning.  Over the last week, Ari's counts did nothing dramatic.  We were so nervous and so anxious that I just couldn't have everyone else nervous and anxious at the same time.  But, we heard late this afternoon that they once again saw no cancer under the microscope, and those teeny tiny bits became even teenier and tinier and are barely even there.  The docs can make no promises, but we feel pretty good with this news.  And again, these are just the preliminary results.

However, we need Ari's counts to go up!  If his blood counts were at normal levels now, he would be in "remission" and we could move on with treatment.  Instead, we just wait and wait (and my armpits sweat) and wait.  If the final bone marrow results confirm today's findings, they will start Ari on a drug that boosts production of cells.  They don't know the exact reasons Ari's counts aren't yet up, but they think it's a combination of the 2 infections, the multiple spinal taps, and Ari's marrow acting a little stubborn (this trait runs in the family).  They also assured us that whether it takes 4 weeks or 6 weeks to achieve remission, it has no effect on prognosis.  We just gotta get there.

Last night, we all did the bone marrow dance.  And it worked.  So, for the next few nights, I'm asking all of you to do the white blood cell dance.  Just bop up and down and do a little shimmy for Ari.  He likes when there's a lot of tushie shaking involved. 

Feel free to send videos...

Read more...

Day 32

Ari loves babies.  When he sees a stroller or a car seat, he always exclaims, "baby!" and then goes to look at the little person.  He has a baby doll he loves to hold, squeeze, and kiss (umm...and only one time did I find it in the garbage can but I choose to believe that is not foreshadowing of events to come).  And when he puts his head on my belly, he lights up with delight, even though I don't think he understands there is really a baby in there. 

At the hospital, there are lots of babies.  Most are real (unfortunately) but some are fake. In the playroom, there are plastic, anatomically correct babies so the kids can hold and rock them, diaper them, and play doctor using them.  Here are a few baby girls Ari favors:

(The one on the far left has some sort of infection.  Look closely.  That must be why she is here.  And the other two?  Hmm if they're on our floor, one has cancer and the other has sickle cell anemia.  I'm not stereotyping; your guess is as good as mine.)

But since we've been here, Ari has been a bit confused.  He called our 3 year-old roommate a baby, even though he was talking in full sentences.  He called the 10 year-old boy next door "baby" as he was slurping ramen noodles out of a bowl.  And today he called a teenage boy (who did not seem amused) "baby" when he saw him watching a movie.  I finally figured out what these 3 kids have in common (other than the big C).  They're all bald.  Ugh.  Ari thinks babies have no hair.  I'm sure as Ari gets older and wiser, he will come to understand that bald = beautiful and not necessarily a very young kid.

Until then, I hope Ari doesn't offend any of our hall mates.  Because when someone gives Ari a hard time, he cries.  He's still my baby.   
_______________________________________________________________________
Daily update:

Ari is just so freakin' happy.  He smiled and laughed all day long.  He has learned all of the nurses names and charms them with funny songs and the chicken dance.  He still wants to "go" and gets frustrated when we have to wait for medication before we take him outside, but I can tell he's feeling great and has adapted well to his new home.  Only a young kid could find this place fun and not foreign.  He enjoys the visits by the nurses to get his vital signs every few hours.  He loves the room service food, the elevators, and all the different devices with sounds and buttons.  And he is amused by ambulances and can watch them coming and going for hours (and he does).

It is tough to process the reality that he is sick.  He looks healthy and he acts happy.  4 weeks ago, he could barely breathe and he had no energy.  The chemo saved his life.  But in the next week or so, he will inevitably start a new round of chemo which will make him sick and sleepy again.  I know this is what we need to do, but I wish I could just take this happy boy home. 

Ari's blood counts did rise last night but I know they go up and down like a yo-yo.  Just gotta keep waiting (and hoping and praying) til the next bone marrow biopsy. 

Have a great weekend.  If I don't post weekend updates, please don't be alarmed.  I'm expecting a very uneventful few days!

Read more...

Day 31

Dear Steroids,

After 3 doses of you a day for the last 30 days, we became accustomed to your wild ways, your crazy eating habits, and your mischievous antics.  We dreaded your lows yet we rejoiced in your highs.  When you woke us multiple times a night to binge eat, we cursed you.  When you couldn't make up your mind and it seemed nothing would satisfy you, we wished you would leave.  And when you got a little mean and told us to move whenever we were near you, you made us sad.  I don't exactly remember inviting you into our lives, and for a while there, it seemed as if you would never depart.  You were not a pleasant or polite guest.

And now that you're gone, I gotta tell you, we don't miss you.  I haven't thought about you once all day.  Only now, as I lay down to sleep, do I realize how much better the day was without your presence.  In your absence, we are calmer and happier and a lot less hungry.  We feel like ourselves again (only a little fatter and a lot puffier). 

We hope we never see you again.  So I just want to put it out there...please do not come back.

Thanks.
_____________________________________________________________________
Daily update:

Every day seems to bring another roadblock.  This morning, Ari woke up with a fever and some funky smelling poop, and he was quickly diagnosed with an infection in his gut (common effect from being on anti-biotics for so long).  No infection is good, but this one is easily treated and doesn't require the removal of his central line.  Phew.  The worst part of this is Ari is considered contagious until he's had a week of anti-biotics after his blood counts rise.  And, this infection does nothing to help them rise.  So the little dude is confined to his room or the outside garden/playground (and our secret outdoors activities) for a while.  No playroom, no arts and crafts, no riding his car through the halls, no walking in and out of rooms, and no playing with all of the nurses and their equipment at their station.  I'm going to try to get creative with indoors activities and bring out all of the new toys (thanks folks) he has received over the last few weeks to keep him entertained.

Blood counts remain steady.  Come on white blood cells!  We need you.

Final results from the bone marrow biopsy showed nothin' cancerous in the marrow.  It looked like recovering bone marrow.  This is good, I guess, but really nobody knows what's happening in there until the marrow starts producing something.  At this point, it could go either way.  They will re-test early next week.    Til then, we wait and wait (and Ari has diahreah from his infection and I have diahreah from my anxiety.  I'm kidding.  But I would be having diahreah if I wasn't pregnant.)

Even with fever and runny stools, Ari was in a fantastic mood all day (and took a 4 hour nap).  He wanted to take a bubble bath for the first time in 6 weeks, he ate normal foods all day (fruit and lean protein, no interest in potato chips or french fries), and he had a lot of fun singing and dancing and doing the chicken dance for anyone willing to participate in his silliness.

Please please please let his blood counts do something good over night! 

Read more...

Day 30

It's ironic...or coincidence...or just bad fate... that I originally thought we would be in the hospital for 30 days and then we would be free.  And today is day 30 and it's July 4th - Independence Day. 

We may not be "free", and Ari may be far from independent, but we made the most out of this summer celebration.  Like you, we:

Barbecued:

Wore goofy red, white, and blue attire:

Watched fireworks.  Okay, we didn't.  But Daddy and I will watch them on TV later tonight.

And we thought about how blessed we are to live in this country.  We thanked our lucky stars (and stripes) to have access to incredible health care.  We reflected on how much we love this land that's yours and ours.  And most of all, we dreamed of Ari's bright future - saying the pledge of allegiance in school, travelling to NYC to see the Statue of Liberty and learning about his ancestors who arrived at Ellis Island, voting in elections (will he take after his mommy or daddy in party affiliation?), and most of all, having the freedom to speak his mind, make his own decisions, and practice religion.  And of course, pursue happiness.  (He truly deserves it.)

God bless America.

 

Read more...

Day 29

Sorry this has taken me so long to write.  It's 9:45pm and Ari is still jumping up and down in his crib. 

The results of the bone marrow biopsy first...(I preface this by saying these are preliminary results. Final results will be available Thursday.)

The good news - There was no cancer in the bone marrow aspirate visible under the microscope. (The bone marrow itself has not been tested. This takes 48 hours.  There is a chance final results could differ from the prelim.)

The so-so news - There wasn't much going on in the bone marrow (no bad cells, not many good cells) because the bone marrow is still recovering from all of the treatment. This means (and we knew this already) that we have to wait for Ari's blood counts to rise to normal levels before we can re-test and be sure that the bone marrow is producing only good cells and no bad cells.  Because his blood counts weren't high enough to start, we knew that it was impossible for today's results to be conclusive.

The bad news - There isn't any. (Well, I guess the bad news is we have to wait at least a week before starting phase 2 of treatment. And we'll be waiting in room 616B.)

I'll explain in further detail at the bottom of this post if you want more info.

In addition to the BM biopsy, Ari had a CT scan today to look again at his chest.  Our doctor told us to expect the mass would be around 10-15% of the size it was 29 days ago and that would be normal.  Guess how much of the mass remained?  0%!  I'm not quite sure what's going on in these photos (there are organs and bowels and stuff), but what I do know is the photo on the left (from June 4) is very bad and the one on the right (today) is healthy and clear and cancer-free.

 
We feel good about the results of both tests.  Though things are still uncertain, today's results could have been drastically different.  The reason they did the test knowing his levels had not yet recovered was to check for visible cancer because that would have changed his treatment plan.  They didn't see any.  And we are so thankful for the news we received.

I don't have the energy or creativity to write about anything else tonight.  Oh, and now it's 9:54pm and Ari is asking for bubbles and pretzels and pointing out all of his body parts on himself and on his animals and Elmo stuffies.  And he did not take a nap today.  Will he ever fall asleep?

I'll leave you with a photo of how we passed the time while we waited for Ari to come out of the OR this morning.  This accurately described my mood all day as we waited anxiously for the test results:

Additional information:

In order for Ari to be in "remission", he needs no cancer in the blood, no cancer in the spinal fluid, and no cancer in the bone marrow. And, his white blood cells and his neutrophils (and a bunch of other stuff like red blood cells, platelets, etc) all must be at normal person functioning levels.  What we know now is that the chemo worked well and that it appears as though there is no cancer visible in his body.  However, now we have to make sure his bone marrow produces healthy cells and not cancer cells.  There's always a chance that the chemo got rid of the cancer, but that the body will produce it again.

The current plan is to wait a week, give a "holding dose" of a chemo drug that has no side effects (except constipation) hope his levels rise, and re-test the bone marrow.   If one week is not enough time for the levels to rise, they will wait 2 weeks. The doctors have assured us every kid recovers at a different pace and we just have to wait and see how Ari's body responds to the medication being out of his system and how his bone marrow now responds to new cell production.  

Read more...