Gratitude

As many people know, and if you are reading this you likely are one of those people, my son Parker (4 1/2) was diagnosed with b-cell Acute Lymphoblastic Leukemia on March 1st 2017. A moment and day I will never forget.

I want to share some of my thoughts here, not really representing my family and our fight as a 'team' but my feelings. I also want to focus on the crazy outpouring of support I have seen and felt from far and wide. 

First off, in case you haven't heard, cancer sucks. It truly does, and sorry Mom if you are reading this but FUCK cancer. I imagine I'll still be angry, sad, emotional, hopeful, optimistic, confused, focused, pissed, annoyed, hopeless, helpless, distracted... UGH. These emotions are going to be here for a long time I imagine. I am a crier by nature. This doesn't help. I get choked up super easily. I'm very good after a few weeks, at talking about facts and tangible events, especially the more scientific parts of the equation. When talking about Parker, or his sisters, and especially his mom, and their feelings... it just chokes me up. None of them deserve this experience, especially Parker. 

I have known for ever that I have an amazing family. I married a woman with an amazing family. We have created an amazing family. But this situation really demonstrates the magnitude of that. I would have not survived the last two + weeks without my brothers and sister. There is no exaggeration in that statement. These people are here for us, for Parker and would do anything to take away his pain, and our pain. My sister made a comment to me a couple of weeks ago that before March 1st she would have said "one of us 5 (10) or Nana and Pop (my mum and dad) being sick was worst case scenario, now I would give anything to be in that hospital bed instead of Parker." Any one of us would switch places with him if we could. Telling Parker's cousins, telling my parents, was the worst. Even now, when I think of those discussions I tear up.  I am so incredibly and forever grateful for my family. 

Cousins, aunts and uncles, cousins of cousins, friends of siblings, cousins parents friends. It is incredible how my family and their pain has translated into empathy from people all over the world. The family is far and wide and showing us love and support every minute. It is amazing, and honestly it is something that I look back generations and thanks my ancestors for laying the foundation for just the best people. 

Just a few examples... My brother Peter has some old friends from college, Lisa and Mack. Lisa battled cancer and won. Her last treatment for breast cancer was a few years ago. They live north of Boston. Lisa drove down to Scituate to deliver a blanket to Parker and the nicest note explaining that she received a blanket when she was in the battle and it became so important to her and was a huge comfort to her. She felt Parker needed one of his own. I don't think I've seen these guys since I visited Pete up at New England College in the late 1980's. They were moved by our story to reach out, lean in, and show us support.

Another example (there are truly so many) comes from my niece Abbie. Abbie is also Parker's God Mother. Abbie studies at Dickinson College in PA. She has a friend who grew up in Pakistan I believe. He speaks often to his family and his mother about his friends here in the states and shared Parker's story with them. His mother has her mosque saying prayers for Parker. People who don't know us, don't know Parker, but have some connection through our incredible family are sending wishes, prayers, positive thoughts and other tangible supportive gestures. It is truly incredible.

One last, a package arrived at our house last week for Parker. A Lego set (loves Legos!). The note said, we don't know you, but we love your sister and her family and are sure we would love you guys as well. Our son thought Parker would like to play with these. So incredible. 

I have lots of friends. Friends right here in Scituate who I have built relationships with over the past 7 year. Along with people here in Scituate who I have known my entire life. Friends from Towson MD (Baltimore) from grade school, high school, church and post college friends. I went to an amazing high school called Calvert Hall College High School. All boys, christian brother school. A community of men who stay connected over the years. I have had classmates from high school who I haven't spoken with since 1985, who have reached out to offer support. I have leaned on HS friends who have had similar experiences for support. I am blown away by the community support through school groups, church, neighborhood who have rallied around Parker and our family to help us through this crazy experience. It is a long road and I imagine the community will continue to be there to support us. 

I have had an interesting career, in some ways an accidental career. In a past life I worked with children in hospitals doing music therapy, play therapy, recreational therapy and Child Life. I did an internship at Johns Hopkins Children's Center. Half of my time was in Pediatric Oncology and half was in the Pediatric Intensive Care Unit. (there is something creepily prophetic in here I know) Now I am seeing this experience from the 'other' side. I shifted into technology and software in about 1994... since then I have worked with people all over the world, some of the smartest technologist you can imagine. I have focused on a sort of niche technology for the better part of the last 15 years. People throughout my career have opened their hearts to me and my family. They have reached out to offer support in so many ways and it is truly incredible. I don't often find myself at a loss for words but this one is tough. I have always tried to be there for anyone, to respect everyone, to find the best in the people I work with. Not always possible, sometimes more difficult than others but honestly it has always been my way. People are awesome and seeing the best in people has always been a good model for me. The number of people from pretty much every stage in my career, who have reached out to us offering support and sharing deeply felt empathy, just amazing. The feeling of a small child having to fight so hard against such a nasty illness, it just hits people very close to home.

It will be impossible to thank every person who has shown us love and support but over the next few months we will surely try. After we get Parker healthy, and get back into a workable rhythm, we will double down on how we support our community, our family, our friends, our coworkers. We will become better people because we have been touched by so many. 

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...