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.
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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...

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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.

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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!)
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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. 

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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?
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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...

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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.

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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!
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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!

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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?
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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!

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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. 
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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,

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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.
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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. 

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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
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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...

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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.   
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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!

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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.
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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! 

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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.

 

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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.  

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Day 28

One of the most reassuring parts of this process has been the success stories we have heard from our friends and relatives.  It seems everyone has a contact who was cured of childhood Leukemia.  In fact, I grew up with a boy (my first crush) who was diagnosed with Leukemia in the 6th grade, and today is a healthy, happy, athletic, super smart doc.  So many people have offered to talk to me or connect me with their friends, and while I've been inspired by the triumphs, I have also been content just working through this with my husband and family.

But soon after Ari's diagnosis, I heard of a little boy named Sam who was also newly diagnosed with Leukemia.  He lives in Chicago, is the son of two rabbis, and the brother of two little guys and one little girl.  I've never met Sam, never heard of his family, and never even been to Chicago.  But we have tons of friends in common and I feel closer to his mom than to almost anyone else in the world right now.  I read her blog multiple times a day (www.supermansamuel.blogspot.com) and I think about little Sam every day.  (I'm sure this is totally creepy, but oh well.)  I leave her comments on the blog and send her the occasional tweet.  And as I read her daily reports, I feel like she's in the hospital room next door to me.  I know what she's going through and she understands what I'm experiencing.  She and I are a team, fighting together, and encouraging our boys to fight.  If she were here, I would hug her (and those of you who know me well know I'm not of the huggers) and let her hug me.  And I just know her little guy will be okay. 

Today, Ari received a package from Sam's mom.  It was the coolest thing ever - a box full of clown noses!  I had read a post on her blog about the noses and made a mental note to order some but forgot.  Thanks so much!!  What a great way to make everyone smile...

And it feels wonderful to be clowning around! 
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Today marks 4 weeks in the hospital, 4 weeks of steroids and medications, 4 weeks of blood counts and rounds and daily reports. I've heard good news and watched the numbers steadily decrease. I've been convinced Ari would be in remission after these 4 weeks, and we would make our way through the following two years and then Ari would be cured.

But today is the first day I'm really scared. Today his blood counts weren't on the up and up. Today the doctors didn't give us reassuring smiles. Today we had more questions than answers. Today feels different than every other day.

And tomorrow morning is the bone marrow biopsy. Tomorrow we either hear great news or dreaded results. Tomorrow we learn whether the medication has worked or if we start with plan B. Tomorrow we are either on our way to remission. Or not.

There are, as always, explanations for the blood counts, and many medical and logical reasons to remain encouraged.  They say Ari's bacterial infection could cause his new healthy cells to try to fight which makes them appear at a lower number, and the large amount of chemo administered finally caught up with him, and that every kid recovers at their own pace.  The doctors tell us this is all still common and not to be discouraged.  Though scared, I remain hopeful and optimistic and convinced his marrow will be clean (or most likely inconclusive, but not full of cancer).  And want to know the thing that makes me the most convinced that he is a healthy, thriving almost-two-year-old who is going to be listed among all of the names of those other Leukemia survivors?  This:

Thanks in advance for your good thoughts tomorrow!

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Day 27

I can't believe I have to do this, but... regarding yesterday's post... no, Lea Michele was not actually in our hospital room.  Our doctor is her doppleganger.  I apologize for the confusion (what's the saying?  gullible was taken out of the dictionary?).  Please don't take me seriously in the future.

Now we can move on...
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I remember a year ago telling a friend at MyGym about my blog.  Another mom overheard and asked, "why obsessed with poop?" and I said, "I don't understand.  Aren't all moms obsessed with poop?" and she replied "no" and then never spoke to me again.  (That's cool.  Obviously we didn't have much in common.) 

Around here, everyone is obsessed with poop.  The pro's measure input and output very carefully, they inspect the output (in much greater detail than I ever have), and then they let us know how to medicate to make the poop medically acceptable.  Oh, and they call it "stool".  A typical daily ass-essment these days sounds a little like this:  "Ari consumed 4580 mls and stooled 1654mls, the stool was hard with unprocessed food, Mr. Goldwasser needs to be stooling at least 3 times a day to prevent anal fissure which could cause infection.  Due to the very large amount of food he is consuming and the relatively small amount he is stooling, his belly is hard and distended.  Today he will be given 3 doses of lactalose to assist with the movement of his bowels and we will re-ass-ess tomorrow." 

(I'm pretty sure my daily report would sound exactly like his...distended belly and all.)

It bums me out that I no longer find much humor in Ari's poop.  It's just (#)2 much to think about every day.  After all this is behind us, I may have to change the name of this blog. 

(Who am I kidding?)
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Daily update:

If yesterday was a 9 on the "steroids are totally annoying" scale, today was a 5.  In other words, it was a much more fun day for all of us.  Though we were instructed by the little guy to "go" to the garden at least 20 times, and then immediately told to "go" right back to the room, Ari spent most of the day happily playing with toys, pushing his little car, and of course, eating.  He gained another .4 kg since yesterday (that's almost a pound!).  He now has a huge chin under his chin and very large cheeks but we were told the steroids would make him puffy.  (That must be it...not the potato chips, pizza, pasta, french fries, and middle of the night meals.)

In other news, we're just waiting for Ari's numbers (specifically the ANC count) to rise so that we know what's going on with the next phase of treatment.  The average kid takes 32 days to have an ANC count over 500 (needed for both the bone marrow test and also phase 2 of treatment) so we still have a few more days to go.  In the meantime, we just wait and hope tomorrow's numbers have increased so we can finalize the BM test.  This number in no way determines whether or not there is still cancer in the bone marrow.  However, Ari's platelets, red blood cells, white blood, and other good cells are continuing to rise which is still a very very very good sign that his marrow is producing only healthy cells. 

Here we are today (Mommy and Daddy doing some 4th of July arts and crafts & Ari spending some time outside)...

Dream of a high ANC count!

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