How we ended up here…

I’m finally ready to put it out there as to how we found out about Elena, and give details on the type of cancer and where it is located.  I warn you, its fairly graphic, so if you’re easily grossed about, you probably shouldn’t read this.  But you will anyway, because that’s what people do.  It’s called morbid curiousity.  And hey, go for it, but don’t blame me for being crass, blunt or overly descriptive later!

Elena started bleeding on June 28th.  In her diaper.  The first time I saw it, it was faint and in a poopy diaper so I barely noticed it.  I was concerned about a yeast infection or a possible UTI.  By that afternoon, it looked like she had started a period.  Yeah, not good in a toddler.  We took her to Urgent Care in Manahawkin since it was the weekend and after her pediatricians Saturday hours.  Elena hates the doctor’s office so she was pretty much yelling and screaming the entire time.  Urgent Care took a look at her diaper and tried to get a urine sample done, unsuccessfully.  So they just decided to call it a UTI and send her home on antibiotics.  Now, I’m no doctor, but as a woman, I could tell where the blood was coming from, and having had my share of UTIs, could tell that was not the case.  But ya know, who wants to keep a screaming crying toddler in the office?  The following week I took her to the pediatrician.  He turned white.  Couldn’t even fathom a guess and didn’t want to look me in the eye when he proceeded to ask if I trusted everyone that had one-on-one interaction with her.  It was uncomfortable, and a scary thought, but I understand that child molestation happens and I had a feeling that was going to be put on the table.  And, as disgusting as having that thought in my head was, I was afraid to rule it out entirely.  Even though I KNOW the two other people that spend that kind of time with Elena could NEVER do something like that, I was afraid to turn a blind eye just in case there was some sort of abuse going on.  It turned my stomach having to ask my husband if he had inapprpirately touched our daughter.  I hated myself that day, but as a mother, had to do it.  Mario looked like he wanted to puke, punch something, cry and scream at me all at the same time.

Our pediatrician sent us to Monmouth Medical, to the pediatric emergency unit for answers.  That was even worse.  The doctors opened her diaper and took a glance, closed her diaper and came back with more doctors.  THESE doctors did not gently ask if there was abuse going on.  They practically accused.  Mind you, they hadn’t checked for any other signs of abuse, just saw the blood and proceeded to point their fingers at us.  Up until that moment I have never been angier in my life.  They fianlly examined her and saw no signs of brusing or abrasions, proceeded to catheterize her for a uirne sample, (negative), put an IV in to draw blood and get that tested (negative again) and finally took a culture from her diaper and had that sent out (would come back days later negative).  We followed up with her pediatrician again after the culture results came back.  He was trying to find Elena a doctor that would see her.  Only problem is, pediatric gynecology barely exisits, and the ones that do RARELY take children under the age of 2. At 17 months old, she was turned away by 3 doctors.  MMMHHHMMM.  My baby girl is having vaginal bleeding and no one wants to see her!?!?!?!  Livid.  My OBGYN finally agreed to see her, thank God.  I’ve always loved my doctors and they agreed to see her even before they knew it was a baby that they had delivered, as it was Elena’s pediatrician that had made the call.

Dr. McDermott did a mild exam on her (NOTHING invasive) and ordered an ultrasound to be done.  Why it hadn’t been done to date, I’m not sure, but am so very thankful to him for seeing her and ordering the ultrasound.   We scheduled it for a couple days later at an imaging center in Brick.  Watching the ultrasound image on the screen was…jarring.  The last ultrasound I looked at was when Elena was growing inside of me, and now here I am, holding her down while she cries. Not because it hurts or is invasive (external ultrasound was done), but because she doesn’t understand why she’s there, why she has to be still.  The ultrasound technician was a very nice lady, a mother of young children herself and I could see the concern on her face as she measured and measured and moved the wand, and measured some more.  When she was done, she asked for us to wait while the images were sent to an off site doctor, “Just in case,” she said.  Mario took Elena out to the car and just before she went in her office she told me that even though she is not a doctor and she can’t diagnose anything based on an ultrasound, if there was anything she could say to ease my mind, she would.  I waited for about 15 minutes before she came back into the waiting room and said that the doctor had received the imaging and that we were all set and could go.  It was there, in her eyes; the words she couldn’t tell me.  I could practically read them.  “This isn’t good,” is what it said.  But she is not legally able to tell me that, so she didn’t.  But the moment I had with her, watching her heart break for me and for my daughter was one I don’t think I will ever forget.  I think that was the day I knew the diagnosis that we would inevitably hear.

When Dr. McDermott called me, 2 days later, I could hear it in his voice.  “There is a 5cm mass…” My heart skipped SEVERAL beats.  “We’re leaning towards a clot…” Whew, *deep breath in*. Then he referred me to Dr. Robert Taylor, Pelvic Surgeon  and Gynecological ONCOLOGIST.  My heart stopped.  Don’t get me wrong, I had thought the word to myself…but had never dared to say it out loud…had never heard anyone use that word in terms of one of my children.  Perspective is a little shit at times like these.  Dr. McDermott was sending us to Dr. Taylor as a precaution though.  He was the guy that writes the textbooks on things like this, so it’s really just to have such a great doctor help him out on this one.  Even after meeting with Dr. Taylor in his office, him having seen the ultrasound images and several pictures of Elena’s diapers I had started taking to have as records, he assumed it would be a clot.  We went ahead and scheduled her sedation for July 21st, so that he could use a scope to take a look, flush out the clot, if that’s what it truly was, and biopsy the mass if it was NOT a clot.  The procedure start to finish was to take 15 minutes.  Watching the clock in the waiting area was torture.  15 minutes turned into 20.  Ok, no big deal…they had to set things up, bring her into recovery, no problem.  20 minutes turned into 25, which turned into 38. Fuck. 40 minutes later, Dr. Taylor came in, and ushered my husband and I into the “private consult room.” Before he even said anything I started to shake, and could see that this grown man, this stranger to us, had been crying.  “It’s a tumor.  It’s cancer.” Band aid ripped the fuck off real quick.  Though, how else do you look into a mother’s eyes and say to them that their child has cancer?  He went on to explain that the second tissue sample has to be sent out before we know what type of cancer we are dealing with, and that children are typically very receptive to chemotherapy, and something else after that, and that he’s calling Children’s Hospital, and something else….and then I stopped listening.  I could’t think anymore.  I’m not sure who had started it, but by this point Mario and I were crushing eachother’s hands, gripping them with all of our might.

We were sent home to wait for further results which should take 3 days to have.  When I called Dr. Taylor the following day, I wasn’t expecting him to have the papers sitting right in front of him.  I called because I didn’t know what I was supposed to be doing.  Am I calling CHOP to make an appointment?  Do they call me?  When are we going to TREAT this?  It turns out, he pulled some serious strings for Elena, told the lab that if anyone deserves to be put in the front of the line, it was the sweet, spitfire of a toddler, my Elena, that needed results and needed them NOW.  I will always be so beyond gratfeul for Dr. Taylor.  For his willingness to take on such a young patient, his real emotion and affection he showed Elena in the short time she spent as his patient, and for getting us the answers we needed, and sending us in the right direction.

People have asked me, how I found out, and honestly, I’ve felt weird explaining to anyone except those that are close with me.  I somehow felt…uncomfortable (?) telling people that Elena has a vaginal tumor.  I think I didn’t want to make them uncomfortable. I had no idea that a baby could even get cancer there, so how would other people react to such an intimate detail.  Which is why, if you’ve followed any facebook updates, or news from the GoFundMe site that my dear friend maintains, it has remained very generalized.  “Cancer.  Tumor.  Rhabdomyosarcoma.”  These are delicate ways to tell people.

I just scoffed at myself.  Literally.  It’s amazing how the brain works…why on God’s earth should I have EVER caused myself stress in terms of being open about Elena’s cancer?  That was seriously stupid.  And it just made me laugh at myself.  Which is good, because I am going to try to end each of these posts as positive as I possibly can.  And laughter, even directed at myself and how ridiculous I am, is positive.

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4 thoughts on “How we ended up here…

  1. You’re an amazing strong mommy … That’s where she gets it from. She’s a spit fire and a warrior on the move!!! Positivity, humor, strength, tears, time … You have it all & as you know we’re here! Love you guys and we’re here for you & your family. Not a gross sentiment .. Perfectly & eloquently stated.

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  2. Wow! I think your sharing Elena’s & your story is brave and beautiful! We all “mind fu@k” ourselves, part of being human. We will continue to pray everyday for your baby girl & your entire family.

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  3. As a mother of a little girl the same as yours, my heart breaks for you and your husband. Your little Angel will be in our prayers every night. May God heal her quickly and keep her pain free. Your story was written from the heart..never apologize for that!!

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