Our journey through leukemia

Fairly quiet day finally. Still waiting on results of the bone marrow test. Here is Connor getting an echocardiogram, if only all it took was a quick jumpstart!!!

UPDATE:  Both procedures today went well.  The spinal tap looks good at first glance but they'll take a better look at it to be sure.  We've booked an echocardiogram for tomorrow (Wed) and Thursday is the PET and another CT scan.   The bone marrow results are a big determining factor in how his treatment will start - but right now we anticipate the central line going in on Friday and then he'll be admitted and start treatment on Friday as well.  The first hospital stay is typically anywhere from 4-7 days. Connor's blood pressure is back down to normal today - so perhaps even just having a diagnosis as opposed to "we don't know" is less worrying for him.  It was high at every appointment last week, so I was concerned.   Connor has moved to "home instruction" which just means he can attend his virtual classes, but doesn't have to.  This way he has fewer due dates to worry about.  He can catch up when he's feeling better.    I didn't tak

11:30am Heard quickly from the oncologist.  He is reaching out to the pathologist to get the final results to narrow down the diagnosis.  It will lead the way for the rest of the tests. He's going to call back with an appointment time for tomorrow so we can meet to coordinate and ask questions. I'll add more when I know more! 4:00PM - Spoke with Dr. Gregory (oncologist).  They still don't have a full diagnosis, they want to redo the blood work, because the low white blood cell count has some Leukemia indicators and that will change some of the treatments going forward.  In addition, tomorrow, they will be doing a Bone Marrow test and a Spinal Tap.  He will be asleep again, but just in the doctors office this time, not at the hospital.   At this appointment we'll have a chance to ask more questions, and connect with the staff social worker who can help us co-ordinate the doctors, insurance and help arrange a counselor to stay on top of his mental health! We also have ins

We are seeing an oncologist at The Valerie Center, a part of Goryeb Children's Hospital at Morristown Memorial Hospital.   The Valerie Center    The link above takes you to their page with a ton of information about the center and their staff as well as place to send donations if you are so inclined.  They also accept Amazon Smile donations if you don't already have one set up on your Amazon account. Lymphoma uses a neon green ribbon for the symbol, and I'll be looking at doing a green hair extension fundraiser in the future.

 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