Masking My Fears (by Abby)

 

 

Cancer sucks. One moment you're healthy and the next minute you're not. Having to watch my little brother go through something so tragic at such a young age that some adults couldn't even do is hard. Knowing that the next day is never promised for him, knowing that every day he lives in a dark room and can't see the faces of his loved ones. 

Today I got a call from him, crying and saying how he just wanted to come home and see me, after this I started crying because I am not allowed to see him because he's in isolation after his transplant and siblings are not allowed to visit because of COVID-19. Most people take things like this for granted, but Ollie and I don't because we know that the next time we see each other could be months away from now. I remember the longest time I have ever spent away from Ollie, I had gotten strep throat and I couldn't see him for three weeks when he was at CHEO. 

Over the last few months I have been especially worried for Ollie, because of the pandemic. I have had to be really careful to not contract Covid-19 because if I were to get the virus and give it to him (since we destroyed his old immune system so that he could get a new one) it could kill him. It makes me so angry when I see people not wearing a mask in public and not social distancing. Like did people forget that we are in a PANDEMIC?! Imagine being afraid of doing normal day to day things because you fear you will get the corona virus, give it to your  brother and end his life. 

If an eight year old and eleven year old can wear a mask in public and can social distance and not hug their friends then so can you! Guess what, Ollie and I have been wearing masks since November because once your family member gets cancer it becomes normal to wear a mask everywhere to avoid getting sick! So please wear a mask.

If I could give you some advice it would be to be grateful for everything you have, count your blessings and to know that you can do hard things even if you don't think you can, because Ollie does it every day.

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. 

Precision and Social Distancing

We have one week of radiation under our belts! Five down and only eight treatments left to go! 

On day two and each subsequent day this week Ollie couldn't wait to get there and get it done as quickly as possible. The days with afternoon appointments were harder because he wanted to get up, get to the hospital to get it done and hated all of the waiting around. Some days he'd wake up at 5 am and have to wait until 1 pm. It makes him very anxious and he obsesses, trying to control anything and anyone around him until he gets into radiation. Morning sessions were easier and going forward all of our appointments are morning ones, thanks to our diligent oncology coordinator rescheduling everything to hep make it easier for Ollie. 

We've had the same radiation team all week and they are pros. Each of them is great with kids, so patient and understanding, anticipating and catering to his every need. They also understand that when something works well, you just do it over and over to provide the child with much needed predictable patterns and processes. 

Ollie is no nonsense and wants to get in the machine and get the mask on as quickly as possible. Since day 2 he has literally done it all in one go. 3 minutes of treatment, 1 minute outside of the machine for out to be set up for the next one, 3 minutes in for the second treatment, 1 minute out, then 10 minutes for the final scan. He has to stay as still as a statue and does it every time. I am certain his teachers will be shocked at his ability to remain still  now since he has always been the kid who was constantly in motion. 

Sometimes he talks to us in the machine. Often he talks about Beyblades or plans he wants to make for the day. Sometimes he just sings along to his Bye Bye Lymphoma playlist (note: let us know if you have suggestions to add to this list) that we made months ago and play when we need reminders of our strength and courage. 

At times he gets impatient, but I either calm him down by taking to him while he's in the machine or he counts the seconds backwards each minute until the time is done. They always give him treats and high fives for doing such an amazing job.

Watching him get radiated is easier than I imagined. It's all very targeted. I sit in the control booth and can see the images and where they're targeting. I am not well versed enough to read the scans (yet), but am asking questions and learning. I am so indebted to the incredible team in Radiation South and to whomever invented these technologies that make this far more precise than ever. 

When we're all done, Mario comes to get us so I don't have to lift Ollie in and out of the van and risk hurting my back again. 

He's doing okay and working from home as needed (see photo below with his favourite new colleague). I am so grateful that he is able to take such an active role in Ollie's day to day care as this really balances things out for our family so that I can spend time with Abby, too. 

Until you have a critically ill or special needs child you really have no idea how challenging the simplest things can be. From helping him up and down the stairs, to assisting him to urinate or have a bowel movement (given he still can't see, his balance is off and he is fearful to do anything alone), to helping him to have a bath (he's so afraid of getting in the tub alone when he can't see, that we've bought all kinds of handles, grips and I usually get in first in my bathing suit to support him getting in and out and from behind while Mario washes him. Every little thing is an endeavor, but they are all labours of love. As he gets stronger and we figure out the blindness, it will all get easier. As he reminded me the other day, " You always say patience is a virtue, Mom."

Abby has been having a difficult time this week, too. She is stressed and wanting our attention and it is challenging because you need to put so much energy into the sick kid that you expect the well kid to just understand and wait for the attention. But anyone with kids knows they don't wait, they demand the attention now. So as usual we're struggling to find the best balance.

Ollie is still on the high dose of Dexamethasone steroids to keep the lymphoma under control until we know of the Lorlatinib drug and radiation are working. We are setting up scans next week so we hope to see that it is wiring and the Dex can start to really be weaned. He's constantly hungry and overeating on them. Trying to control his appetite or his aggression and tendency to want to control everything is almost futile. There are many battles. Some beginning early morning, so he's woken his sister with yelling a few mornings which made everyone's start horrible. We just keep breathing and trying to get past annoyances and stress.

He also has about 2 t-shirts and two pairs of shorts that he likes and gets agitated if we need to change them. While he's always been big for his age he's gained a lot of weight from the Dex and his skin shows stretch marks and thinning of the skin.

On a positive note, he is walking more and going up and down stairs now. He had a virtual physio assessment this week, so will start exercises next week and she is looking into a walker for him to build his confidence in getting around blind.

He often wants to go to the basement or deck for a "change of scenery", too.

Overall he's reacting phenomenally well to the radiation.We struggle to get him to rest he feels so well most of the time! 

One day he wanted to be in the kitchen with me and help me so he dried dishes. I've missed him being my little helper.

He's also been very upset about not seeing friends and family. We dropped some things off to a few friends last week and Ollie got to visit socially distanced from his seat in the car. This was not good enough. He wants playdates and sleepovers and Beyblade matches.

It became such an issue this week that he was begging us to have family friends over this week to do a scavenger hunt. So we arranged a socially distanced visit in the backyard (thank goodness our deck is 25' x 25'!) to enjoy some Ollie's Pizza from Gabriel Pizza (two pizzas for their family on one side of the deck and two for ours on the other). 

Masks were worn for the Scavenger hunt (prizes were Beyblades of course) to protect the immuno compromised. In the end it was  a lovely few hours for all.

Ollie even had a cat nap in.the hammock all bundled up in his cocoon.

Of course now he wants visits from his school friends, so this will be challenging to manage his expectations. We still have to keep our family safe and also to keep our dear friends safe (since Ollie and I are at the hospital daily, we are a potential risk to others if we bring something home). 

But we also have to balance that out with bringing our boy some joy where we can when we can do so safely. He hears the word no a lot and he doesn't like it anymore now than before cancer, but now we also need him to want to get well and feel like it's worth it to keep fighting the lymphoma.

So with three days off of radiation, we wish you all a very relaxing, if quieter than usual Victoria Day weekend!