FROM THE BEGINNING

From the beginning

Many have asked how we found out....

Three weeks ago on Friday, May 16, I noticed a bruise on Harry's arm.  It looked like any bruise you see on your child.  Especially boys that are often out, running about.  He did not recall falling, getting hit, bumping into something, leaning too hard, walking into a tree, getting a bro punch, or any other reason that he would have a bruise with a lump underneath.  He said it had been there but just gotten bigger. Again, no mom would think twice about it.  

But Harry is on humira for ankylosing spondylitis - an autoimmune condition of the spine and sacroiliac joint. (Five years ago he was in the hospital with unknown pain.  It took almost a year to diagnose.). Humira has side effects, so I made a mental note to check out.  But mostly I thought I needed to have it looked at as Harry was leaving on a bike trip in June for 3 weeks.  If it had gotten bigger, I wanted to make certain it would not give him problems on the trip.

The next night, Saturday, we had family movie night.  And I selected "Terms of Endearment."  Really.  I only chose it to show Raina that there are crazier mothers than her own.  During the film, Debra Winger is told her cyst is malignant.  At that point Harry said, "I have a cyst.  Think mine is malignant?" To which I replied "Shut up Harry.  Don't be such a drama queen."

Monday we went to our pediatrician.  She thought it was most likely a lipoma (benign cyst) and should be removed.  But before sending us to the surgeon she suggested an MRI which would be needed for the surgeon anyway.  The next day, Tuesday, we got the MRI.  Wednesday, we were told it was inconclusive and a biopsy was needed.  I did not freak, because I assumed it was ok.

We were scheduled for a regular appointment at CHOP rheumatology the next day, Thursday.  I called our rheumatologist and told him about the situation.  As a possible side effect of Humira is lymphoma, I asked if we should schedule the biopsy for this visit.  But he thought it best to do it in DC.  At the exam, all looked good.  His blood levels and all other tested functions were completely normal.  Completely.  Not even vitamin deficient. The radiologist at CHOP looked at the MRI and agreed a biopsy was needed.  

I called our patron saint of all medicine, Dr. Laura Tosi, to ask if she could do the biopsy.  She said she did not do that but would get us in to the best person she knew.  I assumed it was at Children's.  It turned out she booked us at Washington Cancer Institute.  She got us in for the next day the doctor, Robert Henshaw, M.D., was in, Tuesday, May 27th.  We saw him that morning and he biopsied Harry.  We expected the results on Friday.

But on the next day, Wednesday, which was also Harry's 15th birthday, Dr. Henshaw called and asked us to come back for blood work.  Remember the doctor, not his nurse or the front desk, but the doctor called. I told him Harry had his blood done five days earlier at CHOP and all looked good.   He called up and verified the numbers.  But two hours later I received a call from his office asking us to come in the next day.   They asked us to come in.  It had to be bad.  But I figured a sarcoma.  A  contained sarcoma.  And treatment was easy.  Maybe he could still go on the bike trip.  

We could never have anticipated what he would say.  "Either a lymphoma or leukemia.  We are not certain and you will need to go to Children's for a bone aspiration which we will schedule for Tuesday."  I had prepared Harry for a sarcoma but not a full blown cancer.   Sarcomas can be removed and need a little radiation, not chemo.

The next morning, Friday, May 30th, Harry went to school and took his math final.  Like any other day.  He hung out with his friend Casey, and asked me to pick him up around 2 p.m.  I stopped at the market with Eden.  I cannot recall which aisle I was in, but my cart was full when the phone rang.  The pathology report had come in and it was a rare cancer no one had heard of - blastic plasmacytoid dendritic cell neoplasm.  I was told to pack an overnight bag and come to the emergency room at Children's National.  Harry needed to be admitted ASAP.  And here we are......