The Pain of Empathy

I just read a tweet from Canadian Blood Services about a young boy named Cameron who was a frequent recipient of blood transfusions and whom they featured on their web site last fall. He was 8 years old and just died of brain cancer. I don't know this family, but I am shattered by their loss. 

Empathy is something I've generally considered to be a beautiful, important human ability. I have always considered myself to be an empathetic person and have always been glad to see it in my children as well. On the positive side it enables you to connect with and feel deeply for others...to put yourself in their shoes and try to understand how they feel and what they're going through. On the negative side when you're an empath and read a simple tweet like this, it stabs you in the heart. You feel so genuinely and deeply for others and wish desperately to take away their pain because if it hurts you this bad you can hardly imagine what their real pain feels like. 

I would have felt like this even before Ollie's cancer, but now every story I read like this leaves me aching for these families. It makes me want to rage at the injustice that these beautiful little innocents are dealt. It sometimes makes my faith in God and his abilities a bit shakier. 

I'll be okay tomorrow, but for this moment I am letting myself grieve for this angel I never knew. It is necessary to let the emotion out. Most days I'm great. People ask me how am I "really" doing and most days I am really okay. I am focused and my glass is half full. But some days it just hits you in unexpected waves of emotion. 

For example, this weekend while taking a short drive with Mario and Ollie to do a curbside pickup. I was sitting in the back with Ollie and he was really happy. Singing along with his favorite songs on his playlist. All songs about strength, fighting, not giving up and there he sat battling lymphoma, blind and just happily singing his little heart out about how he still has fight left in him. I got a lump in my throat and tears poured while I tried not to sob and ruin his great mood. 

It happens to Mario, too. We look at each other and have to quickly look away for fear of scaring the kids. They've seen us tear up, but sobbing we do only when they're not going to see it because we don't want them to think we don't believe we'll beat this. We will. We just have perfectly normal moments of agony and need to let them out.

For those of you who are empaths, too. We are sorry to cause you pain, but are so thankful that you are in this with us.

Fortunately, Ollie has generally been happier lately, and desperately wants to see friends his own age after seeing almost none for the last 6 months. His neutrophils and all of his blood counts are still high despite radiation, yet we know that his mental health has suffered greatly from the necessary isolation that kept him from getting sicker. 

Since we know we need to keep him motivated to get through this part and eventually a stem cell transplant, we decided to allow a couple of visits with friends he asked for whose families we know are being diligent about social distancing, hand washing and wearing masks in public.

We were grateful to dear friend Jamie (who is and manages a team of respiratory therapists at CHEO and has many times come by when we were admitted before COVID-19 for hugs or to drop food for us) and her teenage son Jaden who came by Saturday for a deck visit. It was so lovely to finally catch up with her after almost two months in Toronto and Ollie loved having a big kid pay attention to him. Their family understands very well the need to be careful since Jamie is potentially exposed every day. 

We also had a couple of visits with some of Ollie's closest friends from school (with whom we are also friends with their parents). We explained to these parents that while we are pretty confident we do not have COVID-19 (Ollie had 3 negative tests at Sick Kids because they did one each time he was admitted or in the ER), we are at the hospital daily, so we may be more of a risk to them then they are to us right now. They both showed incredible concern to keep Ollie and us safe. We agreed to deck visits with masks and hand sanitizing and minimizing touch, recognizing that Ollie desperately wanted to play Beyblades with them, too. So one day we welcomed mom Sarah, Olivia (from his class, daycare and soccer team) and Charlie. The other we were happy to have mom Sarah and friend, classmate and daycare buddy James. 

I didn't take many pics because I was just enjoying seeing him interact with peers for the first time in so long. He was so happy afterwards that despite the slight risk to everyone, I felt it was the right thing to do. How can we torture this boy with treatments and tests constantly and there not be any short-term rewards or reminders of why he wants to get well again?!

That said, with things slowly opening up again and given not everyone is choosing to wear masks and maintain that 2 metres of social distance, we know we'll have to go back to being isolated soon as the risk for cross contamination becomes greater. People will start to see other friends and family, too and each interaction multiplies our potential for risk. Plus, when he's back in remission, we plan to go back to Sick Kids for a stem cell transplant to finally give him Abby's beautiful stem cells and that will mean more months of complete isolation.

Today radiation was harder because we had appointments at CHEO with Dr. Pinto and in the Ottawa Cancer Centre's radiation clinic with Dr. Chang before his radiation session, and that agitated him. We had to stop the radiation treatment a couple of times to calm Ollie. But, we've done 6 now, so tomorrow we tip into the second half! 

A CT is now planned for Friday morning before radiation. This will confirm if the drugs and treatments are working or not. On the one hand I'm not looking forward to the stress of it and getting him to drink the orange contrast drink. On the other I am desperate to know if this in combination with his Lorlatinib is really working. Either way, we'd continue with this treatment until radiation is done next week, but it would be such a motivator to know for sure that it's all really working instead of just being hopeful and thinking that I only see improvement because we so desperately want it. 

As of today it's been exactly 182 days or 6 months since Ollie was diagnosed. Originally his treatments were going to take 6-8 months. I thought by summer he'd be well and we'd take an amazing trip somewhere as a family to celebrate. Now we may have that much more time ahead of us on his journey to get well and then some. He's being granted a wish from the Make A Wish Canada Foundation, but he's chosen a trip to Atlantis Bahamas because he loves waterslides and wants to swim with dolphins. Sadly because of COVID it might be years before we can take this trip (thankfully they give you until your 18th birthday!). 

So rather than stress about the CT (I've already had a tight neck and headache off and on for 4 days over the radiation) I'm going to let go and let God.  I have learned that obsessing about any of this does not help us to control it or feel better about it. That He is the only one who knows the real plan or outcome of any of this. So I am asking Him constantly and believing that He will gift us what we are asking for. That Ollie will survive and thrive after all of this.