File this under the list of things that now make me cry…
But don’t worry, they aren’t sad tears. They are tears of gratitude.
Today, Grimshaw Public held their annual Terry Fox run. Elijah’s teacher sent me the picture of his class with each student pictured wearing Ezra’s name. A little later a family who used to use the same dayhome as we did sent me the picture of dear Miss M wearing Ezra’s name.
Earlier this month my Dad’s cousin’s husband wore Ezra’s name when his school did the Terry Fox Run.
Also earlier this month, an inspiring young woman from Grimshaw asked if she could include Ezra’s name on a shirt she had made to recognize childhood cancer awareness month.
It’s a little surreal that after a decade of reporting on these events for the Grimshaw community, it’s my son’s name on these stickers.
When I opened the photo of Elijah’s class my eyes welled up with tears. Ezra was getting his daily chemo at that moment. He rolled his eyes, looked at the nurse, and said “My mom is a crying mom.”
Haha, well not usually, son. But, yes. These pictures make me tear up because they show just how many people are in our corner rooting for Ezra to beat this.
Thank you family, friends and community. I am not sure I will ever be done saying thanks 💕
Goodness, how I wish masking wasn’t a thing still.
And yet, here we are.
Regardless of whether COVID was still ravaging our province and threatening our healthcare system, our family would likely still be in isolation. Ezra’s immune system simply can’t handle any additional attacks.
So, in a way, our family being separated right now is a blessing. With Elijah back in school and Elliott in daycare for the first time in his little life, both boys have been hit with the typical fall colds. Elijah wears his mask all day at school and daycare and only had mild cold symptoms last weekend. He likely got this from Elliott, who has been trying to overcome a cough for a couple of weeks now. Elliott’s cough gets better for a few days and then reappears for a few days, making life interesting for Cody.
Wearing masks at work
These runny noses and coughs have prevented Cody from being able to come and visit Ezra and I in Edmonton, and that’s hard. But, what would be harder is having Ezra re-admitted to the hospital because he picked up his brothers’ colds.
Ezra has also had a surgery postponed indefinitely because of COVID. He currently has a PICC line that needs to be removed and replaced with an IVAD. His oncologist had hoped to have this done a little more than a week ago, but because this surgery is elective and Ezra’s PICC line is still functioning, the surgery cannot be booked at this time.
The only way Ezra will get an IVAD without a miracle from his oncology team, is if COVID ICU numbers decrease or his PICC fails. A failed PICC could mean infection, blood clots and a delay in treatment. All things that, for obvious reasons, would not be beneficial to Ezra’s overall progress.
So, as we have been doing for some time already, our family continues to mask in all indoor situations. This is a provincial mandate and yet there are groups of people who think wearing a mask is a great inconvenience.
Just typing that sentence hurts my heart. If you think wearing a mask indoors is too great an inconvenience, I am sorry, but we cannot allow you to be physically in our lives at this point in time.
If my asthmatic seven-year-old can wear a mask from 7:30 a.m. to 5 p.m., then surely you can wear a mask to visit for an hour, go shopping for 30 minutes, or sit in a church service for 90 minutes.
Wearing masks at the Harvest Moon Festival
Today, our home church put out a statement from the elders on their stance on COVID protocols. They very clearly stated that while they believe we should respect government guidelines, it wasn’t their duty to enforce them.
This means that if you want to walk into church without a mask, no one is going to ask you to put one on.
This also means that until Ezra is well, or until COVID is no longer a thing, we cannot physically attend our own church. This is sad for us. For further clarification, Ezra will undergo treatment for his cancer until he is almost eight years old. He’s currently five.
I follow a pastor’s wife from Michigan on Instagram. Last week she posted photos of her twin five-year-olds wearing masks to visit with a vulnerable member of their community. She challenged her audience to remember that vulnerable people have value too, and if we choose to act in a way that completely prevents these people from taking part in public life, we will miss out on the great value these people have to offer.
I had to message her, in tears, to thank her for her message.
Choosing the mindset that says vulnerable people can isolate (for years) so that you don’t have to be inconvenienced by a mask is something I could not understand prior to Ezra’s diagnosis, and is something I certainly cannot understand now.
Ezra is a funny, bright little boy. He has so much to offer the world and yet we currently live in a world that says he needs to stay shut in at home because allowing him out would create too many inconveniences for those around him.
I have said it lots since Ezra was diagnosed and I will say it again, as many times as needed: I so wish I lived in a world where people would choose to gladly wear a mask for the sake of others.
Cody and the boys for some time have gone back and forth calling each other funny names.
They think it’s hilarious.
I do not.
Mostly because the names they call each other are not always funny out of context. For example, when Ezra yells at the nurses’ desk on our way out of the clinic “Goodbye you stinky face!” I don’t always have time to explain that he thinks he is the funniest kid in the world, and he was not being intentionally rude.
This explanation feels extra important to me because Ezra is not usually the most friendly kid in the oncology clinic. The second we walk through the doors his mood takes a turn and doesn’t improve until we walk back out through the doors. I am hopeful that with time, Ezra will be less grouchy with the nurses, but I also get it. Being at the hospital isn’t a fun time for him.
Ezra also doesn’t shy away from commenting on various smells, including body odours. It started with him just telling Cody or I that he thought we needed to shower. Sometimes he would even tell us this within a few hours of either one of us actually having a shower.
This week he told the oncologist she stank. I reminded him it was not polite to comment on how someone smelled and suggested to her it was her perfume or shampoo. She smiled, reassured Ezra that she had showered that morning, and said she doesn’t wear perfumes or use strongly scented laundry detergents or shampoos.
“It’s probably the chemo, a lot of cancer kids are super sensitive to smells,” she explained
I knew this, but always assumed that meant strong smells like perfumes and laundry detergents and colognes made cancer patients nauseated. But, as evidenced by Ezra, he’s mostly just deeply offended by the way you smell.
Today he’s told me certain foods he enjoys stink and he can’t eat them anymore.
“My appetite for that food is gone, Mommy.”
Thankfully we were always a home with very few scents. Chemically created scent pods make me feel ill, scented laundry products make us all itchy, and Cody and I don’t really wear any perfumes or colognes.
So, when we are finally home, we will continue to be a largely scent-free environment and asking the same of our guests – although guests will be limited, and asked to mask (more on that later).
After our first week of round two I am quickly realizing what a blessing from God it was that Ezra was not nauseated on top of everything else during induction.
After five straight days of a new chemo, Ezra is beat.
Our week started out so well. Monday was mostly good news. Tuesday Ezra got to start round two (consolidation), which was in question for a moment because his neutrophil count was borderline. Wednesday Ezra was feeling pretty strong, we even went shopping for a toy thanks to a gift card from a friend. On Thursday Ezra walked all the way from the parking garage to paediatric oncology, which is a fair walk for someone who has had their muscles weakened by chemo and steroids.
A photo I snuck when he was feeling his best
On Thursday afternoon Ezra and I played an active game in the condo, which had him waking all over looking for things I had hid. Then, around 3:30 p.m. he started to feel sick. He puked the first time that night an hour later and again within 90 minutes. He was also moaning and unable to sleep, and likely in pain. I say likely because when Ezra is not feeling well, he shuts right down. I am then left to guess what he needs most.
Writing this seems too heavy for me to be sharing publicly. I’m still feeling kind of raw after a couple of hard days.
I won’t pretend I didn’t spend a lot of Thursday night and Friday crying right alongside Ezra. Many things were triggering that day, right down to seeing an ambulance rush to the hospital just ahead of us on Friday. It may be a while before I can see an ambulance and not have my breath catch in my throat.
But I also feel compelled to share this side of our journey because September is childhood cancer awareness month. We are so new to this brutal world and, as a result, being active in creating awareness has not been something I have felt I have the capacity for.
But, after watching another cancer mom share a hard moment her child endured “because this is the reality of childhood cancer,” I felt I could also share some of the harder moments.
Ezra shutting right off in those tough moments is undeniably hard for me, but I get it. He feels awful. He didn’t choose any of this. He also has a five-year-old’s understanding of this. If we, as adults, are struggling to understand this, I can only imagine the thoughts he has that he does not share.
I also know I need to continue to show myself grace. I was not born a patient person. Neither am I a natural caregiver. I lead well, I get things done, I am organized, and some of that has served me well in this process.
I joked with a friend that when Cody broke his ankle Fall of 2019, by the time he was mobile in the Spring of 2020, I was so over being the caregiver. I was burnt out. I did not have the capacity to continue doting on my broken husband (and I believe Cody would agree with this assessment 😉). Now, those five or six months are child’s play compared to what’s yet to come. Looking back I can see how that broken ankle was another one of God’s ways of preparing my heart and mind for another big job He had in store for me.
Moving forward, we have two days of rest before going back for another four days of chemo. There are three new chemo drugs in the line up this week, which means the potential for a whole new line up of side effects.
Please pray Ezra has a restful couple of days. Please also pray these next drugs aren’t quite so hard on his little body as the last one was – and if they are, that I may have the peace of mind to deal with each new bit of hard that comes our way.
I am currently sitting in the hospital as we wait for Ezra’s first day of his second round of treatment. Our big meeting with the oncologist was yesterday, and the news was mostly good.
When Ezra came into the hospital in early August his stats were not good. He had a white blood cell count of just under 200, there was evidence of leukaemia in his cerebrospinal fluid and he had a very large mass in his chest.
Today his white blood cell count is pretty close to zero, exactly where it is expected to be after induction. There is no evidence of disease in his cerebrospinal fluid, and the mass is gone.
Immediately, this means he will be scheduled to have his PICC line removed and replaced with an IVAD. This port goes in his chest and is preferred by oncology. The only reason he didn’t get it before was because the mass was so large there simply was not room.
So while that all sounds great and after induction many patients are in remission, Ezra is not quite there yet.
Because Ezra’s white blood cell count was so high, the oncologist said she knew when we were admitted there was likely involvement with his bone marrow. The bone marrow biopsy he had a little over a week ago did confirm her suspicions. While there was no evidence of disease using a microscope, a deeper look did reveal cancer in his bone marrow. The results of the test indicate he has fairly high minimal residual disease in this area.
This test result bumps Ezra into the high risk category and is part of the reason the oncologist is still recommending we proceed with cranial radiation. The brain is a place where this type of cancer likes to relapse, so his team wants to make sure we do what we can to prevent a relapse.
So, from now until the end of November we will be doing almost daily chemo, and eight days of radiation. There are a couple of two-day breaks in the schedule, but not many.
We thank each of you for your well-wishes and prayers. Ezra is doing well and his progress so far is good, according to the oncologist. He was just very sick when he came in, which has made his hill to climb a little taller than others.
As a secondary update, the boys were able to visit for a day and a half last weekend. They all had so much fun together and it was so nice to have them all here.
As an added bonus, because playing with his brothers is so much fun, Ezra blew past his first physical therapy assignment. He’s now able to take a step up and stand on one leg, briefly, without experiencing pain. He is still a little wobbly to bend over and not always super stable while walking, but the physical therapist gave him a gold star for progress this morning.
Here are a few photos from our time together last weekend.
Today I had a phone consult with a radiation oncologist at the Cross Cancer Institute.
It was a big conversation. At the end of it I gave the go ahead to move forward with cranial radiation therapy for Ezra in early October.
Chemotherapy is one thing. Yes, the list of common, uncommon and rare side effects are long. Radiation just adds a whole new level of risks.
Complicating my feelings on radiation is the part of the conversation where the doctor I spoke with said that while it has been common practice since the 1980s to supplement chemotherapy with radiation in kids with risk factors similar to what Ezra has, there has been a recent shift in the research.
This shift indicates doctors may no longer routinely recommend radiation. The doctor said opting out of radiation for kids like Ezra has not even been a conversation in the past, but it is starting to be, now.
The hesitation lies in the fact that this research has not yet been peer reviewed, and therefore has not caused doctors to change their protocols. Should the research be rejected during the peer review process, which is expected to take a year, and we choose not to do radiation now, it will be too late at that point to still do radiation.
So, we cannot wait for the results of this study.
The reason it is important to do radiation now is to prevent a future relapse of Ezra’s cancer in his brain. As the doctor put it, there is “some hint” there are Leukaemia cells in his cerebral fluid. This fluid is difficult to reach with chemotherapy alone, which is why they want to hit it with radiation as well.
The possible long term side effects are awful. It’s hard to not feel like we are going to get him through this hurdle only to doom him to another. But, the idea of a possible relapse of his cancer, specifically in his brain, is also awful.
So, today when my heart is overwhelmed with making an impossibly hard decision, I reminded myself that I am not doing this alone.
While in Ontario this past weekend I was driving on my own and could not stop crying. It’s been a few weeks since I cried like that, not since we were still in the hospital. The song “Come as you Are” by David Crowder came on the radio.
The chorus of that song urges the listener to “lay down your burdens” and “lay down your hurt, lay down your heart, come as you are.”
I used to think these songs were powerful and nice. But, if I were asked if they truly resonated with me and my heart, I would have to say no. Admittedly there was a mental block for me. I know I have lived a very blessed life. I generally have a positive and grateful attitude. I didn’t have many burdens. Nothing that seemed big for very long anyways.
I can’t say that’s true any longer. So, while listening to the song, I was praying and giving Ezra to God. I know there’s nothing I can do that isn’t already in His control for “Earth has no sorrow that Heaven can’t heal.”
The very next song in that emotional drive was “Surrounded” by Michael W Smith. The song largely repeats the lines “This is how I fight my battles,” and “It may look like I am surrounded but I am surrounded by You.”
This song was always an anthem of strength. Any Christian will say they fight their battles with the help of Christ. But when I listened to it that day it was an anthem of humility. In my mind I could see the ugly life of a mom with a cancer kid surrounding me, and then those things disappear in the golden light of angel wings.
I am surrounded by God and his almighty protection, His miraculous healing power, His courage.
And, when it comes down to it, that’s all I truly need.
As of today, we have officially completed our first round of treatments. Ezra still has a CT scan tomorrow to check on the mass in his chest, but after that we wait until Monday to meet with the oncologist to learn what comes next.
Encouraging factors so far are that his blood counts are stable and looking good, the number of leukaemia cells in his spinal fluid (which, I am told, were very minimal to start with, but still present) have decreased, and he is still strong physically, all things considered.
Even Pikachu got a visitor sticker today
He had another lumbar puncture and chemo treatment administered to his spinal fluid today as well as his first bone marrow aspiration. While they do put him to sleep for these procedures he is experiencing some pain now.
After getting up off the couch and experiencing some pain Ezra told me it wasn’t very nice of the doctors to “needle” him on his back so close to his bum. He is annoyed, but that pain shouldn’t last too long, I am told.
We also met with physical therapy today and got some ideas to get Ezra moving and working on some of the things that are now hard for him. The physical therapist said based on how he’s walking, it is likely his hips are bothering him. He also cannot bend over without losing his balance and stepping up or putting his weight on one leg is out of the question.
While Monday is the date of our big meeting, the oncologist did give me an idea of what comes next, and confirmed what I had been hoping against. Ezra and I will not be getting back to Grimshaw much before mid-November.
In more encouraging news, Ezra is done his steroid treatment and his moods are already so much better. I was blessed by my family and able to get to Ontario on the long weekend. When I got back Ezra put his hands on my shoulders and gave me a kiss on the cheek.
It has been about a month since Ezra has done this. I would kiss him and he would just say “love you mom.” At home, prior to cancer, he would insist on also kissing my cheek. So, it was awesome to see that little bit of my kind boy return.
The steroid also made Ezra’s body blow up like a balloon. In addition to weight gain from his insatiable appetite, he does have some fluid retention in his face and legs. Ezra’s face has gotten so large Elijah did not recognize him in a photo he saw this past weekend. This was both surprising and not surprising. Ezra’s face is almost in recognizable right now but it didn’t occur to me that his brother wouldn’t know who he was in a photo.
The unrecognizable photo
Ezra then got to see his brothers for the first time in a month yesterday. The difference in his energy level while the other two boys were here was remarkable. Having the kids together was good for all of our hearts. Even if they spent a good chunk of time playing with Ezra’s most prized item from the hospital treasure chest, a whoopee cushion.
Elijah is wearing a mask because he has a asthma cough. While we are 99 % positive his cough is caused by a slight asthma flare up (thanks Ontario humidity!), we would all rather be safe than sorry.
The boys couldn’t stay long because Cody had to get them back to Grimshaw and ready for school and daycare in the morning. I was gathering up their things and encouraging Elijah to get his shoes on when Ezra gently said “Don’t rush them out Mommy.”
Ah man buddy, I wish they could have stayed longer too.
Our Family Chatter 