The beginning Sept 19-27, 2020

 I first noticed the growth on Saturday night Sept 19, 2020.  Connor had put on some weight during COVID and I think I thought he just had more of a double chin.... but looking back now - I see the lump on the right side of his face.  This is Connor on the first day of school, two weeks earlier.

I asked him about it, and he said - "yeah, it's been there for a while - I told Dad".  I've been through a range of emotions on this but blame doesn't belong here - so I've moved on.   No point in looking back.

I felt the lump and it was hard to the touch, but it didn't hurt him.  He had no fever, no pain, no other symptoms at all.

Sept. 20 - Sunday morning we called the clinic and did a video call with the doctor.  She said he needed to be seen right away, so we were there at noon when they opened.  That doctor questioned why were at an urgent care clinic when it seemed chronic (because it began 3 weeks ago).  I explained about the earlier call, but of course this made me question whether or not I should even be worried.  They took blood work and sent a note to his pediatrician.

Sept 21 - Monday I kept him home from school (thank goodness for virtual) and called the pediatrician.  We got in to see her at 10am.  She felt the lump and suggested we should get an ultrasound.  She sent us to the car to wait (thank you COVID) and called to say she'd made us an appointment.  Gave me a phone number and by the time I was home I had been emailed the paperwork for insurance and had to head out again at 2:30.  Connor attended a few more classes and we headed out again.  At this point I thought we were going for an ultrasound.  They did say that we could only bring one parent (Thank you once again COVID) so Connor and I went by ourselves.

The sign on the door said Valerie Center for Children with Cancer.  I tried not to think about that too hard.  Connor noticed it too.  As we checked in, they took his blood pressure 3 times, on both arms, and no matter what it came back high.  My first clue that he was worried too.  

The oncologist, Dr. Gregory, kept us waiting a bit, but was very easy to speak to.  He decided very quickly that it needed to be biopsied and wanted us to speak to the surgeon.  He left to get his number, but actually called him directly and found him available.  The surgeon came in about 10 minutes later. Dr. Lazar told us he could rule out infection right away with a quick test. "How are you with pain, Connor" he asked.  He was pretty hesitant at first, but Dr. Lazar explained that he could put a needle in his neck and see if he could draw out puss and it would prove to be an infection.... no biopsy needed. Connor said that would be fine.  No such luck.

We left the office with paperwork for book CT scans, had to go downstairs to the hospital for an X-ray right away and book the CT for Wed.  Dr. Gregory had spoken with his staff and she was leaving for the day but would put the insurance request in from home to get pre-approval for the CT test.

I called at 9:00am Tuesday.  Connor was in school and I booked the tests for Wed.  The insurance company called with the preapproval shortly after that, and I relayed the info to the Valerie Center.

Wed we went into Hackettstown Hospital for the CT tests, Thursday they scheduled the COVID test, and I found out Wed that the biopsy would be Friday.  

It was scheduled for 4-5pm, they wanted us there at 3pm.  Originally they'd tried to get him a morning appointment, because he had to fast, so I asked if he still couldn't eat after midnight.  They said 6am was okay - so Kirk got up at 5:30am to make him eggs and home fries.

We registered at 3, and they took him back right at 4.  

All registered!

I was able to be with him until he went to the OR.  Dr. Lazar came by and told us the pathologist would be there and would give us an answer right away if he could, but that if it was conclusive we'd have to wait for the results.  The anesthesiologist came and told Connor exactly what would happen, and stayed with him until he woke up in recovery.  

Waiting to go in.  He says he's smiling here!!

I feel like the actual surgery only took about 10 minutes.  Dr. Lazar came out and suggested we talk in a conference room.  My heart sunk.  I knew that couldn't be good.

Diagnosis: Lymphoma.  They don't know what kind, but can tell it's not Hodgkin's (that's the "good" kind).  I'm not sure I got all the information after that.  He did find out we lived in Randolph and said that he did too.  And if I needed anything he could be there in 15 minutes.  So very kind.  Even though he was ready for me to cry, it certainly didn't make him very comfortable.  He did tell me he'd already informed Dr. Gregory.  Sure enough Dr. Gregory texted him almost right away listing the next steps.  I've forgotten most of them.

After a 30 sec call to Kirk I was able to go back and be with Connor until he woke up.  I realized I couldn't bear to leave Connor alone while I got the car so I texted Kirk to come up, then called my friend to drive him.  I have the very best network of friends so when she couldn't, and her husband couldn't she called another friend and Kirk was with me in about 30 minutes.

He was pretty out of it all evening and had some broth and went to bed.  He says he didn't sleep great - but the first few days the incision was aching so I'm sure it woke him up overnight too.

The incision

This has been one of the longest weekends ever.  To get that diagnosis and now have to wait until Monday to see the oncologist and get started on the next steps.  I do much better with information and this "not knowing" part is really hard.  My amazing friend network, and of course our incredible family, have all reached out and we so appreciate the support.

I'll keep posting here to keep information in one place.  It helps me to put my thoughts down too - and saves me from retyping info in several different places.

Right now - we are all doing okay.  We appreciate everyone reaching out, but until we can get treatment started there is very little to do.  I promise I'll reach out once we need.  

I did discover today that driving by myself lets my thoughts wander too much, so if you discover a podcast that you think is funny feel free to share (I haven't had much luck paying attention to audiobooks).  Or if you have a time of day that you are available and wouldn't mind a call, let me know.  I called a friend this morning who kept me from crying the whole way and distracted me from my thoughts  This is what I need the most!