From poop to platelets

Sunday, June 10, 2012

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

Because my son has cancer.

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

So to answer a few common questions first:

1. How did you know he was sick?

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

And we haven't left.

2. What is the diagnosis and prognosis?

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

3. What goes on during these first 30 days?

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

4. What are the side effects of treatment?

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

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

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

6. Will anything hurt?

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

7. How did he get it?

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

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

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

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

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

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


DebSox04 June 10, 2012 at 10:40 AM  

O JulieSue & Matt....I'm sorry you are going through this! I am O+, and will be happy to donate blood(I always do anyway) to Ari! Is he at Children's in Boston? Please, please let me know if there's anything I can do!

Anonymous,  June 10, 2012 at 11:06 AM  


My and my family's thoughts are with you. There's nothing more I can say.

Erin Feldman

Michelle Black June 10, 2012 at 11:21 AM  

You are incredible! Strength And love to you and ari..

Anonymous,  June 10, 2012 at 5:12 PM  

I am sending love and hugs and kisses from Texas. I have no words for what you are going through... I will hug Levi tighter tonight and we will add Ari to our nighttime Mi Shebeirach prayers for sure. I wish there was more I could do from here but know that we will be following your journey and we will be thinking good thoughts!!! <3 Amanda Miller Marrone

Sharon June 11, 2012 at 6:39 AM  

Willie, I send all of you my thoughts, prayers and so much love. May Hashem warch over you all.

Sharon June 11, 2012 at 6:40 AM  

Willie, I send all of you my thoughts, prayers and so much love. May Hashem warch over you all.

Carrie Bornstein June 20, 2012 at 9:23 AM  

You are an inspiration. I know you're not trying to be - you're just doing what you need to do to take care of your boy, yourself, your family. But thank you for letting the rest of us accompany you on this journey in some small way.

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