A little life update

Ezra and I are in Edmonton, and despite knowing we have a very early morning, I am not able to sleep just yet. So, why not write a little summer-time update.

The boys finished the school year at the end of June. Earlier that month Ezra and Elijah both earned their yellow belts in Taekwondo. They both then enjoyed a short Spring baseball season and another round of swimming lessons. This made for a very crazy couple of weeks at the end of June. I am not sure that I have quite recovered.

Elliott completed his first year of playschool and is excited to go back again in the Fall. Both Elijah and Ezra earned the fine arts award for their Grade level at the end of school awards ceremony. Ezra also earned an academic achievement award.

Cody and I were so proud of both boys, but it’s worth noting that our Leukaemia warrior, who did not attend Kindergarten, who did not quite know all of his letter sounds ahead of the first day of Grade 1, who missed almost 40 days of school, achieved academic excellence. This kid is amazing.

The summer, so far, has been full of slower days, lots of outside play when the air isn’t too smoky, so many crafts, some reading, and recently a whole lot of Monopoly.

Most of you won’t know that Cody loves Monopoly. In fact, we own six (or seven?) versions of the game. And he has three (or four?) more versions on his wish list. Monopoly isn’t a great two-player game, so unfortunately most of these Monopoly games have sat unused in our games chest, until last week. Since then, Cody has played several rounds of Monopoly with Ezra and Elijah – and they love it. Elliott has even gotten in on the fun a few times.

Elijah always seems to lose, whether that’s bad luck or much too risky game play, I am not sure. Luckily, he’s been a fairly good sport about that and continues to have fun playing the game.

Tonight Ezra and I are in Edmonton in preparation for his second-last lumbar puncture appointment, ever! That’s right, 19 down, just two more to go! He is also quickly approaching the second anniversary of his diagnosis.

More and more I find myself so grateful for this life we are living. Ezra is doing so well, all things considered. We are six months away from end of treatment. But even now, life feels normal.

Our family has recently started going back to church in person. We stopped attending in person when COVID closed the world down. Then as the world opened back up, Ezra got sick and we went back into isolation to help protect him. Then Ezra got a bit stronger but still struggled with every little bug and virus he was exposed to at school, so we chose to continue to minimize our contact with large crowds. Then, it just became too easy not the attend.

Cody and I knew we had to stop giving into the easy and get our family back into a church. It’s amazing how you don’t realize how much you missed something, or need something, until you get it back. That first Sunday we went back, I have never felt more at home. It was as if God Himself was welcoming me back into His house. Families belong in church, and I am so glad we are getting ours back into it.

What’s more, is that every single week I am reminded that we are where we are because of God. Was the beginning of this journey incredibly hard? Yes. Beyond hard. But despite all of the trials, our family has made it through, almost to the other side, completely intact – and maybe even stronger than we were before.

God is so faithful.

A song that is a ministry to my heart recently is “Faithful Still” by KingsPorch. I will attach a video of the song below. I don’t have all the right words yet, but I do know that God was faithful to our family during these last two years. And he remains faithful still. Being able to see his faithfulness – even when things seem bleak – has always been what has carried us through and what I know will continue to carry us through whatever may still come our way.

After all, “I have a hope, I have a future. I’m a child of the mountain mover.”

Brothers (briefly) reunited!

One of the hardest parts for me, as a mother, in all of this is not being able to be in more than one place at one time.

I also distinctly remember telling my boys that when they were all asking me for different things around the house pre-cancer diagnosis, but it’s taken on a whole new meaning now.

I legitimately will not see my house until maybe middle of September. I left it on August 6.

Until this weekend I also worried about when I would be able to physically be with Elijah and Elliott. Their lives have been turned upside down too, and they have even fewer choices than Ezra does.

When my friend Ashley suggested over the phone that she was willing to come and get the other boys and fly them to Ontario, I laughed and was so touched. You see, Ashley is a nervous flyer, and to fly to Edmonton and back again with two children that were not her own would take a great deal of bravery.

A little while later that same morning, when speaking with my mom, she had the same idea. She suggested that she and my dad could fly to Edmonton and take the other two boys back to her house for a couple of weeks of fun with their Ontario cousins and friends.

Cody got on board with the plan, and flights were booked. My parents arrived in Edmonton on Wednesday, August 11 and Cody brought the other two boys from Grimshaw the next day. We all then got to meet with Ezra for a few minutes outside the hospital. It was brief but it was what everyone’s hearts needed.

• 

• 

• 

• 

• 

• 

• 

• 

Elijah looked hesitant and unsure, which was exactly what I expected from him. We had a person from the Child Life department talk with the boys to help explain what was going on inside of Ezra’s body. I wasn’t sure how much Elijah really took in until he made some comments later. The most important bit was that Ezra cannot make anyone else sick, so we don’t need to be afraid of giving him hugs or playing with him.

Elliott must have taken that to heart as he spontaneously gave Ezra no less than three or four hugs while we were all sitting there.

Mom and Dad, Elijah, Elliott and I then stayed in a hotel Thursday and Friday night before they headed back to Ontario this afternoon. We went swimming, spent some time at a park and splash pad and just generally enjoyed being together.

• 

• 

• 

• 

• 

• 

• 

• 

• 

• 

On the first evening in the hotel, after everyone was sleeping, Dad got up to use the washroom. I don’t remember it but I guess I sat up as he walked to the washroom and asked him if he was okay.

“You then said, ‘Oh it’s you,’ and went back to sleep,” he said.

The next time he got up, I actually followed him to the washroom, opened the door (just a little bit, no things were seen that cannot be unseen 😉) and said, “Ezra? Ezra, are you okay?”

Dad quickly confirmed he was fine and I walked back to my bed, and turned to my mom and asked her where Ezra was. Mom said she could tell I was maybe sleep walking and was afraid I was starting to panic and was going to hurt her. Good news is that whatever she said snapped me back to reality, I said Elijah and Elliott’s name and remembered that I was not in the hospital.

We all had a good laugh about this the next morning and Dad said he was sure he had been super quiet, but I guess not quite quiet enough to escape my heightened mom-hearing.

It’s also amazing how quickly a week of caring for a very sick child can train your mind.

Dad happily reported on Saturday morning that I left him alone when he used the washroom on the second night. 😆

• 

I am now back at the hospital with Ezra and we are aiming at being discharged on Monday. Cody has gone to the condo we have been gifted the use of while we need to remain in Edmonton, to sleep and to get things ready for Ezra and I to move in.

We had hoped to go on Friday already but Ezra developed some severe pain in his jaw and throat, a known side effect from one of his chemo medications. We finally got that pain managed on Friday, and now we are working on consuming enough water and taking medications orally. Ezra gets pretty worked up when a new medication arrives in his room. I don’t blame him, there’s lots, and very few taste very good. But he’s getting braver and more accepting and we are working on routines and rhythms that help him feel in control of how he is taking his medications. He doesn’t have any control over much of what is happening to his body, so this is one way we can let him have some choice…as long as that choice gets the meds into his body, eventually.

I would specifically request that those praying would pray that Ezra conquers the anxieties he feels around taking his oral medications. There are many that he will be taking for a long time. We also request prayers that he may be more open to learning how to swallow pills, and finally that the side effects he is currently experiencing will either dissipate or remain managed.

A look at how leukaemia snuck into our lives

We have heard a few times that people were shocked to hear of Ezra’s diagnosis because he had previously looked so healthy.

Ezra is a sturdy kid, who has always had a darker skin tone than the rest of us. This means he’s got that healthy sunny glow even in the dead of winter, especially when compared to his brothers. Where we live winter can last close to six months. There’s plenty of time to get very pasty.

He’s never been sick and we have never had to make middle-of-the-night emergency room trips with him. We have with the other two.

• 

• 

• 

• 

• 

• 

• 

When we thought he had a very severe case of strep, Cody and I joked that Ezra waited to get sick until he could get really sick.

…little did we know how true that really was.

Ezra’s symptoms appeared in the afternoon on Sunday, July 25. Cody noticed some spots on his stomach that were strange. At first glance it was a rash, but it wasn’t raised and looked like burst blood vessels. Cody was concerned, more so than I was, and he took Ezra to the ER in Grimshaw that evening.

At that point Ezra had no other symptoms. He had complained on and off for the previous couple of weeks of a sore stomach, but nothing persistent. After checking him out and doing a urine sample, the doctor sent Cody home, explaining that it was likely a viral infection and we should come back if the rash did not resolve itself by Friday.

Just two days later, on Tuesday, July 27 Ezra’s spots had grown to now cover the inside of his arms, his legs and his neck. He had developed a cough and a sore throat. He was taking big naps that were not disrupting his evening bedtime and he complained more persistently of a sore stomach. He was also eating less at meal times because of his stomach pain.

• 

• 

I took him into Grimshaw ER that evening and the doctor took a look at his throat, did a swab, and said it was strep. He prescribed an antibiotic and we were on our way.

The next morning the pharmacist told me that the antibiotic may bug Ezra’s stomach, and that we should try to give it to him with food.

For the next nine days we struggled to get Ezra to take his medication and often had to give it to him without food. He wasn’t eating much. And, while his sore throat had gone away and the spots had not gotten any worse, his stomach hurt a lot, he lacked energy and was still taking those huge naps.

Then, when giving him a bath that night I moved his hair off his forehead and discovered a large bruise. I couldn’t remember him hitting his head and neither could he. If I told you that I remained calm in this moment, I would be lying to you.

As we were preparing to leave town for three weeks, Cody and I agreed he needed to go back to the hospital. It wasn’t long before the doctor made it clear to Cody that we were not in fact leaving town for three weeks.

Cody told me I needed to come to the hospital because they were going to fly Ezra to Edmonton and Ezra wanted me to go with him. So, we called Cody’s mom in the middle of the night to stay with the other two while we were at the hospital. When I got there the doctor said we needed to go to the waiting room to have a talk.

If a doctor wants to have a quiet talk with you, you can almost always assume it’s not a simple diagnosis.

“Ezra is a very sick little boy….his white blood cell count is 200…it is likely he has a cancer in his blood called Leukaemia.”

My head dropped and the tears came. I had had an inkling in my heart that Ezra’s symptoms were pointing to something much, much bigger than strep, but I had ignored them. I told myself to stop jumping to the worst case scenario and trust that the antibiotics would do their job.

We also learned that the throat swab done on July 27 had come back negative for strep. Ezra never had strep.

Countless people, nurses and doctors, have since reassured me that ignoring his severe symptoms for over a week was not out of the ordinary. One nurse here at the Stollery told me that the terrible thing with leukaemia is that many of its symptoms are not extraordinary. A sore throat, an upset stomach, fatigue. These things could be any number of viral infections in children. The spots should have been investigated further, but it is possible to develop those spots with strep.

So, that is how he went from perfectly healthy to receiving chemo therapy in under a month. If I had any word of advice for all parents coming out of all this, it would be to not ignore your instincts. While the doctors and nurses are the experts in their field, you are the person who knows your kid the best.

Ezra’s Fight: Day 3 update

Good news: there was no need to start writing this post at 4 a.m. Instead, it is now nearly 9 p.m. and Ezra is down for the night and all is quiet.

I had a very busy morning today. From nearly the second I opened my eyes there was a parade of people coming to see Cody and I. So much so that I needed to ask them to wait a moment so I could put my glasses on in order to see who each person was.

It was overwhelming and I spent much of the morning in tears. Ezra once again told me enough was enough and I needed to stop crying. So, I asked him if I could steal a little of his bravery to get me through.

The tears often come when I am forced to think about the fact that we are at the Stollery right now and not in Ontario. I am definitely grieving the trip we were supposed to be on, and dealing with the disappointment of not being with all of the people we were supposed to be giving hugs to. The tears also come when I think about Elijah and Elliott at home.

Elliott was super pleased with this generous gift from a dear friend 💕

I also cry at each new act of generosity and love from all of you. A fun gift for Ezra this morning from a dear friend from my University days, each meal being carefully prepared by so many of you who are taking the time to make sure the food is safe for Elijah, all of the financial gifts, and every phone call, email, comment or direct message. I don’t know how I will begin to thank you all, but I do know I will remain ever so grateful and humbled by your love and support.

Ezra will soon be a dinosaur expert thanks to this Dino-themed gift he received this morning.

It’s easier for me to be okay with what is going on here, surprisingly enough. That may be because there is a plan here. Ezra is being very closely monitored and taken care of by the best of the best. We are in good hands.

Ezra got to go to “the beach” today, a playroom on this floor. He got to play air hockey with Daddy and even beat him too. We also spent a lot of time checking out the fish, it’s his favourite place to go, and we go often.

• 

• 

• 

As for a medical update, Ezra is doing the absolute best we could have hoped for. When we arrived at the hospital in Grimshaw on Thursday night, his white blood cell count was nearly 200. Tonight, the nurse came in to tell me he is sitting just below 3! That is now on the low end, but that is exactly where we need him to be.

Both the oncologist and the kidney specialist came to speak with me today to confirm that his kidneys were performing excellently and we had avoided the risk of needing dialysis. Because Ezra’s white blood cell count dropped so dramatically and in such a short period of time he was at a significant risk of developing tumour lysis syndrome. Praise the Lord, and thank you for every one of your prayers, that that risk has passed.

He is also on a steroid meant to help shrink the mass in his chest. This steroid is likely to make him hungry and moody. We are seeing both of these things. He is asking for food more frequently but is increasingly picky. Currently the only thing we are able to get him to eat willingly are junior bacon cheeseburgers from Wendy’s. When I picked one up for his supper tonight I had flashbacks to my days at DCHS and the mass number of Wendy’s Jr. bacon cheeseburgers that were ordered weekly for the student body. I should start counting how many he eats during this hospital stay. I have a feeling it’s going to be many.

Ezra did start snapping at me tonight, and was being fairly mean. He was exhausted, and the nurse said it was likely we were already seeing rage caused by the steroids. So, I am getting lots of practice with deep breathing, gentle reminders and giving all the grace.

Tomorrow is Day 4 on our treatment plan, which means it’s our second chemo day. Please pray specifically his body would handle the chemo in the best way and the side effects would be as minimal as possible.

Overwhelmed, and so, so grateful

I am hoping that 4 a.m. doesn’t become a regular writing time. But, I am awake and it’s quiet. So, what better time to get some of these thoughts out of my head.

First, Cody and I are speechless over the level of support that we have received from our own small Grimshaw community. You guys have offered us a huge amount of love in so many different ways. We are grateful for every last prayer and healing thought, the answers and incredible gifts you have provided for our most immediate needs, and the way you have shown how you are ready and willing to help love on our boys at home.

From the bottom of our hearts, thank you! I may not be able to thank each of you individually, but please know that every message we receive strengthens the imaginary strong arms that are currently holding both Cody snd I on our feet.

To our broader Albertan community, thank you for doing much of the same things. It’s nice to reconnect with people who have moved away from Grimshaw, or people who we have met over the years.

To my Ontario community – you guys are simply the best there is. I know through your outpouring of support how much you want to help us, and love on us. Even though we may not have maintained strong connections since I moved away, the old connections and foundations remain, and I am once again reminded how truly wonderful is my hometown and childhood community.

If you missed my first post about Ezra’s diagnosis, you can read that here.

Ezra received his PICC line yesterday in the mid-afternoon, followed by the lumbar puncture and his first dose of chemo. He received more chemo around 9 p.m. that night. He has also received his first transfusions of platelets and blood.

We did take a decently sized walk yesterday after his procedure. The nursing staff seemed impressed with his stamina so quickly after being under anesthesia. So despite coming in so sick, with a few added complications, he’s doing well. The blood transfusion also gave him a huge boost of energy and he was awake until almost midnight last night. I on the other hand was ready for bed by 8:30, so we had a snuggle and he ever so sweetly kept telling me I could just go to sleep.

• 

• 

He handles each new thing like a champion. He’s scared and sometimes that fear gets the best of him, but for the most part he has sailed through each new treatment and medication.

Dinner last night for him was lasagne, which we don’t eat at home because of Elijah’s allergy. He thought it was pretty delicious.

It’s now almost 10 a.m. and he isn’t feeling great. He says his stomach hurts, which was to be expected. There is a fish tank right outside our room that he likes to go to and look at. So we took a quick little walk there this morning to look at and count the fish. There is one large fish, and that one is his favourite. He is now happily playing video games with Daddy.

His blood work currently indicates a good news/bad news situation. While the chemo is killing the leukaemia cells (good news), those cells have caused an increase in phosphorus in his blood. Too much phosphorus can cause kidney problems. This is being closely monitored and may mean he could end up on dialysis.

Things change multiple times a day. But it’s reassuring that he is being so closely monitored.

Ezra mostly gets upset when he tells me he wants to go home and I have to remind him that we won’t be going home for a long while. Please pray he reaches some understanding of the fact that we cannot go home.