Everything changes

The Lead Up to Day 0

Wednesday March 1^st 2017. I will never forget this day. No matter how hard I try.

Life has been crazy, the company I was working with decided to shutter up. I was pretty much the last person drawing a salary. Now the company is on life support just enough to support existing customer which is < 1 person, the founder. Last day was 2/15/2017. Stressful, but optimistic I’ll find a great new opportunity quickly, at least I was on that day. Have a few leads that are simmering now.

Then Wednesday. Few calls scheduled, few people to connect with, lots of research into what may be out there for me. My wife, Michelle, was not working Wednesday, just some work from home. She was bringing our little guy, Parker (4 ½), into his doctor to check him out. He had just gotten over an ear infection and after a couple rounds of antibiotics it was pretty much gone. He wasn’t quite himself though. Tired, lethargic, complained of breathing and some aches. She just wanted him to get checked out.

11:00 am

Parker had a small finger prick at his pediatrician’s office to do a quick blood test. His coloring and lethargy made me think he may have some anemia or some side effect from the antibiotics. His pediatrician pretty quickly told Michelle to take him to the ER for some more tests, and to do it now. I believe at this point she was told that his hemoglobin (red blood cell count) was low and needed to be checked out.

OK, now we are worried. They swung by the house to grab a few things expecting to be in waiting room for a while. Michelle and I were both probably a bit scared at this point but mostly confused as to why there would be this obvious over-reaction.

12:00 pm

While she was headed to ER I started doing some research and there was some clear evidence that an antibiotic reaction could result in anemia. Easily found and addressed from what I was reading. There were a few other things that could have been going on which were scary but this was likely it. I was getting stressed.

I texted my Sister who is always my go to person when I’m stressed (sorry Lisa!). She was out and about so I didn’t hear from her for a while.

1:00 pm

Michelle called me and told me the ER had called an ambulance and was bringing Parker down to Boston Children’s Hospital. WHAT? We were now getting really stressed and confused. I’m downplaying some of this, I was personally heading into some panic mode. I’m torn at this point because I should be with them, but I need to be here for Hannah (16) and Clara (13). They will be home from school in a bit. Michelle expected the ambulance to pick them up around 3:00 to transport them downtown.

3:00 pm

I was very scared now as the information I had was that his heart rate was super high, his red blood counts were super low (causing the anemic side effects) but his white blood cell counts and his platelets were also low.

Ok, full transparence here. Since it is now the morning of the 4^th that I am writing this, the actual sequence of events gets blurry here. I think I’m at least close and honestly it doesn’t matter too much…

4:00 pm

Girls are scared, they are holding it together but it is tough. Not knowing what is happening is hard. I was on and off the phone with Michelle, my brother Peter, texting with Stephen and David… I was getting worried. Read that as I was freaking out, trying to keep it together for my girls, failing miserably.

Parker was going to the PICU (Pediatric Intensive Care Unit). They were starting blood transfusions and still did not have a diagnosis for us.

Michelle called to tell me what she knew. She was stressed but keeping it together and has a clinical background so she knew what to ask and how to advocate for Parker and collect information. She told me the docs wanted to conference me into a call later when they got some results from blood tests.

She was told that the oncologists were looking at the blood tests. Nothing like simple statements to throw your panic into overdrive. We were assured it was routine as ‘oncologists’ were aligned very closely with ‘hematologists’ and both are blood experts.

I finally spoke to my Sister around 6:00 PM I think. My siblings are incredible, super supporting, do anything for you type. We are a pretty close group. They all seemed to try and echo the same sentiments. “It will be OK”, “He is going to be fine!”, “It’s probably a weird virus and they will figure it out” and most importantly “You are so blessed to be in Boston. Boston Children’s is the place to be if your child is sick.”. They are right, the messages are helping a bit provide me brief moments of relative calm in the middle of my meltdown.

I know we were all pretty scared, Michelle was somehow maintaining as she was still along at hospital with Parker. I think I freaked out Peter a bit at one point as I was just screaming “WTF!!! WTF!!! What is going on!”

8:00, 9:00, 10:00 – no idea really

The phone finally rang and Michelle was with the docs and called me on her mobile so I was on speaker. The attending doc asked Michelle for some background and she pretty much went through the past 12 hours since bringing Parker into the pediatrician’s office. She gave some info on what we saw that led us to bring him in. They wanted to hear her through the steps. I think they knew it could be a little cathartic. After Michelle provided details she asked me if I had anything to add.

I said that we were very anxious for obvious reasons and that we knew there were a few things that could be going on and I would like it if they cut to the chase and share what they found to rule our worst-case scenarios.

The attending said something like, “OK yes, and thanks so much for sharing the details that is really important. We do have some bad news to share. Parker has Leukemia.”

I may have blacked out a bit here as I don’t know what was said… Michelle was sobbing, I was sobbing. The worst possible sentence anyone can say to you.  

Day 0

Our journey starts here...