Job available - apply today

Seeking individual to serve as on-call birth coach in the highly likely event pregnant woman's husband is caring for toddler son in the hospital across the street. 

ESSENTIAL DUTIES & RESPONSIBILITIES
* Provide distraction during IV placement
* Assist nurses in applying cold packs to patient's forehead after she faints from IV placement
* Make patient peanut butter and jelly sandwich before epidural is administered
* Allow patient to have full control of TV remote control during labor
* Check in every 5 minutes with patient's husband to receive status update on toddler son
* Laugh at all of patient's jokes (even if not funny)
* Remind patient to ask for Attending anesthesiologist and not Resident or Fellow to administer epidural
* Provide non-judgemental support when patient requests epidural at the earliest sign of discomfort
* Call for nurse assistance when patient poops on the table
* Pretend patient did not poop on table and never tell a sole if she did
* Take pictures during labor and video during last 3 minutes of delivery. 
* Do not post video/pictures on Facebook or YouTube
* Remind doctor to collect cord blood and tissue and call Viacord within 1 hour after birth
* Provide encouragement and support throughout labor, but without ever physically touching patient (unless specifically requested)
* Promise to forget what patient's female parts look like immediately after birth

QUALIFICATIONS
* Ability to perform the essential tasks noted above in a satisfactory manner.
* Patience and empathy and thick skin in the event patient gets a tad nasty
* Incredible PB&J making skills
* No fear of blood, needles, pain, and any other medical procedures
* Relatives may not apply.  (Sorry folks, Thanksgiving dinner would never be the same.)

EDUCATION/EXPERIENCE
* At least 25 hours watched of TV programs showing births such as "16 and Pregnant", "Teen Mom", "A Baby Story", "I didn't know I was pregnant", and/or viewings of the live birth at the Science Museum.

To apply please submit resume and cover letter.

______________________________________________________________________
Update:

As anticipated, Ari was not admitted to the hospital today.  He is now scheduled for a 5-day stay beginning next Wednesday. 

(I knew I shouldn't have packed a bag.  I jinxed it.)

Read more...

What's the plan Stan?

I am a planner.  I make to-do lists months before I host a party.  I write out itineraries for vacations.  I even go online and plan my menu selection before going out for dinner.  (I forget what it's like to go out for dinner.)  I want to know as much as possible in advance and I don't like surprises.

But when it comes to this cancer stuff, there's no way to plan.  I've learned to listen to a proposed plan and then anticipate a last-minute change.  Even with this new mindset, I was mentally prepared for an in-patient stay beginning today, a move to a new home early next week, and then a few days of unpacking before my water broke and a new baby appeared.  But, as I should have expected, Ari's counts weren't high enough to begin the new meds today.  So we are now hoping for a Friday start date but may be waiting until next Wednesday to check back into Children's Hospital. 

And this, my friends, brings us ridiculously close to my due date.  With my luck, I will be having this baby on Tuesday.  Why Tuesday?  Well, it is moving day.  And, we will probably be back in the hospital.  But really, we can be 3 places at once.  No big deal.  So I'm just going to plan for this insanity and then be pleasantly surprised if things change.

In the meantime, we are packing up our place, keeping Ari happy and healthy (I really could not have prevented his bloody forehead collision with the coffee table), and just taking it one day at a time.

Can someone remind me what goes in a hospital bag?  I should probably get one together.

And, this baby doesn't need furniture or a glider chair or a bassinet or anything else, right? 

Oh, and, will someone please come over and shave my legs?

Read more...

Where have I been?

There have been no celebrity sightings.  No strange medical phenomenons.  No big tests and no bad numbers.

Life is normal.

Okay, normal is a bit of a stretch.  Between 3 back-to-back chemo courses, 1 lumbar puncture, 8 nurses visits (to administer meds), countless clinic visits, and a whole lotta puke, things have felt surprisingly ordinary.

Oh, right, and then there's the fact that Baby Girl G is going to arrive in the next 3 weeks so we've been trying to prepare (more mentally than anything else).  And, uh, we go back to the hospital next Wednesday for a 3-5 day in-patient stay for a nasty new drug.  Um, err, yeah.... and, surprise, we're moving... in approximately 2 weeks.

So nothing is normal.  Except one thing.  This kid of ours is just as happy, goofy, energetic, zany, and carefree as always.  He is back to sleeping 12 hours a night (I'm lucky to get 4), he is eating brussel sprouts and pizza and smoked salmon, and he is happiest playing outside all day long.

His mommy is a bit stressed.  But he is not. 
______________________________________________________________________
Medical update:

I know I've been slacking on the updates.  I apologize!  Here we go:

Ari has now finished (as I stated above) three out-patient chemo courses.  Most of the drugs have been administered at home, either by a visiting nurse injecting directly into his port or in liquid form squirted into his mouth by his daddy (mommy can't touch chemo because of the soon-to-be born baby).  He had a few infusions (chemo given over a longer period of time) at the clinic and 1 dose of drugs injected intrathecally (in his spinal fluid) during a lumbar puncture.  The spinal fluid removed during that test was negative/healthy/cancer free.  Let's hope that continues forever.

Ari has only experienced mild nausea as a side effect of all of these drugs.  He still enjoys the nurses visits and the clinic appointments, and only complains when they remove the sticker from his chest which protects his accessed port.  Oh, and he freaks out when I make him get dressed every day.  And change his diaper.  Or make him go inside.  But none of that is cancer related.

He is now 1 day into a 10 day off stretch before he is readmitted to the hospital for a high dose of a drug that has some potentially really icky side effects.  If he sails through this phase, we will be home in 3 days.  If he has any bad effects (fevers, etc), we may be stuck there longer.  Compared to our first hospital stay, this should be quick and relatively easy .  (Except I'll be 38 1/2 weeks pregnant.  Please no roommate.  I need a private bathroom!  And please, no baby.  And, because I don't ask for much, please no side effects!!)

Thanks for all of the calls and emails and visits.  If I don't update for a few weeks, don't worry.  In my free time, I'm trying to nap.  Or bathe.  Or watch RHONY.  

Read more...

Team Ari

I'm not a runner.

But over the last 2+ months, I learned that Matt, Ari, and I surround ourselves with runners.  And these incredible individuals don't just run for exercise. 

Our friends, family, neighbors, sorority sisters, fraternity brothers, camp buddies, and CJP family ran to our side with meals and toys and cards and visits.  And they ran with smiles and encouragement and thoughts and prayers.  Some ran sprints and some long distances.  And they ran as fast as they could to be by us for the most important race ever - the race to save Ari's life.

No ribbon or medal (or thank you note... ahem, I promise they're coming) can thank all of you runners for the outpouring of love and generosity you have already provided us.  Without your support, we wouldn't have made it this far, and we wouldn't have the energy or mind strength necessary to stay up-beat and energetic and committed for the next 2+ years.  This will be one heck of a marathon and when we cross the finish line, we know you will not only be cheering us on, you will still be by our side, holding our hands, lifting us up, and ensuring we win. 

You are all part of our team.  And we are forever grateful.

I'm so very proud to introduce you to a subset of this team - a group of actual runners! 

Meet Team Ari, comprised of 14 incredible friends who are running the B.A.A. half marathon on October 7th to raise money for the Dana Farber Cancer Institute.

Emily Beck, Jennifer Cramer, Rachel Glazer, Eli Gurock, Sheri Gurock, Neal Karasic, Adam King, Caryn Lazaroff, Emily Leventhal, Bryanne Mahoney, Leah Ofsevit, Eric Ritvo, Seth Rosenzweig, and Sami Sinclair are not only running for Ari. They are running for every child diagnosed with cancer, every adult fighting day and night to beat the disease, and every family running their own marathon. These friends of ours are training hard and sacrificing their knees and ankles and nipples to raise funds which will help the Dana Farber find a cure for cancer.

For more information on the Dana Farber, click here. This is the story I tell when explaining how lucky we are to be treated at the Dana Farber for the next two years:

A few days after Ari's diagnosis, we asked one of the nurses and then a doctor if we should get a 2nd opinion... just because it's the right thing to do.  Both individuals said the same thing.  They would be happy to give us names of docs around the country, but that people come from around the world to the Dana Farber for their 2nd opinion.  And our head doctor, Lewis Silverman, is the big cheese when it comes to pediatric Leukemia.  He researched and wrote the protocol that kids follow which has significantly increased the remission and cure rates for Ari's specific type of cancer.  He is known world-wide as the man who keeps kids with Leukemia alive.  And all of his work and research has been done through the Dana Farber.

The more funding the Dana Farber has, the more research they can do and the more advancements they can make.  And the more lives they can save.  I thank my lucky stars that we live in Boston and that Ari has Dr. Silverman and the Dana Farber on his team.

And as I've described before, everything at the Dana Farber is fun, is friendly, and is focused on kids and their families.  There are fish tanks, art projects, musicians, toys, games, and an unlimited supply of playdough and bubbles.  There are countless staff members there just to keep the kids happy and engaged.  When we're at the Dana Farber clinic, we feel safe, cared for, and optimistic.  We trust every nurse and every doctor.  We have fun!  It feels like we are with our family.  And it's only been a few weeks.

I learned over the last few months to both ask for and accept help.  So on behalf of the 14 runners, the hundreds of children and thousands of adults currently being treated at the Dana Farber, and of course Ari, I ask for you to join Team Ari as a supporter, a cheerleader, or a friend.  Donate securely online, come out and cheer on October 7th, "Like" us on Facebook, and/or help us spread the word. 

To learn more about the Dana Farber or the team, please check out http://tinyurl.com/bn78kuu.

You're already a member of Team Goldwasser.  Now join Team Ari.  Thank you for everything.

Go Team!

Love,

Read more...

Viva la Vida

We all know I love famous people.  It's pathetic.  I get a kick out of meeting anyone... from reality TV has-beens to Oscar winning movie stars.  Now, don't get me wrong.  I would trade a sit-down meal with any and every famous person of my choice for a healthy 100% cancer-free son (in a heartbeat), but I try to "look on the bright side" of this situation and meeting a few famous folks makes this process a little easier.  Okay, and maybe even fun.  And sometimes thrilling.

So, when I heard we missed Chris Martin from Coldplay last week, I was bummed!  And he didn't just shake hands.  He sang for the children!  He played keyboard alongside older kids!  He gave each patient a goody bag with an Ipod and other fun stuff.  And he gave every parent... front row tickets to see Coldplay in concert! 

Sigh. 

It's cool.  I have Coldplay on my ipod.  I've seen them before in concert.  I can always watch the show on Youtube.  And this isn't about me.  Ari wouldn't have appreciated the visit anyway.  At the end of the day, we were much happier meeting Wally the Green Monster (especially since we thought it was Cookie Monster) than Gwyneth's talented hubbie.

And by "we", I obviously mean "he".
_________________________________________________________________________
Update:

Today ended a 5-day chemo course.  Thank goodness we chose to do this easy-peasy week as an out-patient.  Here are some of the highlights of the week:

Ari and Daddy snoozed:

Schmoozed:

Screw-ed:

Boozed:

And watched the Red Sox lose (from John Henry's box!):

It was a fun few days through and through(s).

We spent a few short hours each weekday morning at the Dana Farber Jimmy Fund Clinic and then we made a cameo on our old floor at Children's Hospital yesterday and today. I know this may sound crazy, but it was a great week! Ari had a blast at the clinic (so did we). Wednesday was Happy Birthday Everyone day (cake, ice cream, and presents for all... even the parents), Thursday was ice cream sandwich and Red Sox day, and Friday we got to "make your own pizza" and meet Senator Scott Brown. The only time we heard Ari complain was when we made him leave.   No joke.  And this weekend, Ari was thrilled to be back in the hospital, flirting with the nurses and playing with the toys. 

We have 2 days off before starting the next round of treatment on Wednesday (all outpatient and this time chemo is administered at our home so we don't have to go in to the clinic.  What will we do all day?!  Who won't we meet?  What fun activities will we miss?  Do you think we can ask to get the chemo there?). 

Ari has been feeling great and his counts are high so he is enjoying play dates and outdoors outings (shhh don't tell anyone but we did go to Target yesterday...we washed hands well afterwards).  Now that he's no longer port-accessed, he can go swimming and take a real bath. 

Side effects and low counts are inevitable as the chemo begins to work its mojo and we expect a not-so-fun next two weeks because of the double dose of meds.  But who knows... this kid is truly incredible and doesn't let much get him down. 

Oh my goodness and how did I forget... Ari slept 12 hours straight the last two nights!  Hurray! 

(I bet I would have slept well if I had met Chris Martin and gone to the Coldplay concert.)

Read more...

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...