Ezra is officially SIX!

After what has been the hardest year of his young life, Ezra is now six!

When we got back to the cancer clinic this week he told the nurses that he had a birthday party on the weekend and he turned six. Then he told them that I said he’s having another birthday on Saturday, “And, I guess that means I am going to be seven.”

Not quite sweetheart. Slow down. These next couple years will continue to be hard but we still want to enjoy the good that comes with each year too.

In the last year, Ezra has lost two baby teeth, he’s learned how to swim on his own, he flies down water slides, and loves to run. Ezra loves to have fun, he’s a big goofball and he is loud (although most people who know our family will say he comes by that honestly). He can count forwards and backwards, he is starting to read, and has become a bit of a LEGO master.

He was also diagnosed with high risk T-ALL. He lost the ability to walk and then had to relearn how to walk, climb stairs, squat down, and pick up items from the floor. His weight has fluctuated rapidly. At one point his face was nearly unrecognizable. He lost all of his hair, eyebrows and eyelashes.

He experienced the most intense stomach pain. He battled nausea, neuropathic pain, and dehydration. Most of his favourite foods became completely unappetizing. He endured 108 doses of chemo, 42 days with steroids, eight sessions of full cranial radiation, X-Rays, CT Scans, an Echocardiogram, the placement of two central lines and a feeding tube. He has lived in four different homes for varying lengths of time.

Five was a hard year for Ezra. It wasn’t the year we had imagined or hoped for for him. And while we don’t want five back, we are grateful that he’s still here to welcome six.

Happy Birthday my sweet boy. I am grateful we get to see you continue to grow and achieve and listen to your great big laugh. We love you Ezra.

Back on track

After three weeks of being on hold, Ezra got the green light to resume chemo on Monday.

For three weeks we have been told that while Ezra’s blood is showing it is recovering nicely, his neutrophil level just isn’t high enough to continue with chemo. And, while his neutrophils was still a bit low on Monday, his oncologist decided they were high enough.

Now that we are back on track, we are excited to be able to go home in May, after Cody’s birthday but before Elijah’s. I promised Elijah I would be home for his birthday and I am just so glad that’s going to be true.

Three days in, Ezra seems to be handling the chemo well. He’s still eating, he’s not feeling sick, and he’s still got all the energy. We are grateful for a great start to a new week.

It’s almost time for a party!

If there is one thing we can be grateful to COVID for, its setting the example for a birthday celebration that allows the immunocompromised honouree to both feel loved and protected.

Ezra’s birthday is sneaking up quickly. Because of yet another delay in treatment we are home in Grimshaw now until Sunday. As this is as close to his birthday as we are going to get, while being together at home, we would like to invite anyone who has been praying for, supporting and cheering Ezra on since August to drive by our home on Saturday, April 16 between 2 and 3 p.m. to honk, wave, and wish Ezra a happy sixth birthday.

If you need our address, please reach out to either myself or Cody, or if you have the most updated copy of the First Baptist Church directory, our street address is in there, too 🙂

When Ezra was diagnosed just before his Kindergarten year, some of my heartbreak came from knowing he would have to wait just a little bit longer to start forming his own friend group, outside of my friends, and outside of his brother’s friends.

Pre-COVID, Cody and I always threw big parties for Elijah (see some of them here and here and here). Ezra was just three when COVID began, and just as things were starting to feel more normal, Ezra was diagnosed with cancer. This meant another delay in a party all his own.

This may seem silly to you. But I really enjoyed planning these parties and theming them around the boys’ interests. So, while Ezra will have to wait at least another year for a big, themed, party all for him, this drive-by event will be something I am sure he will tell all his special adults at the hospital about as soon as we get back there.

Update on Treatment

As I mentioned above, Ezra has been delayed yet another week. While his bloodwork shows that his blood is recovering, his neutrophil level is being extra stubborn and is sitting just below the necessary threshold.

The delays have given Ezra lots of time to get stronger, which will be a blessing ahead of the remaining three weeks of chemo that we have in this cycle. Ezra has also packed on a bunch of weight over the last two months, thanks in part to steroids that cause an increase in appetite. While there remains a small chance he will need a feeding tube before the end of this cycle, so long as he continues to hydrate well, he will likely be able to say goodbye to the tube for good.

Over the last week, Ezra has spent a good amount of time putting together beaded necklaces for each family member, kicking around his new soccer ball, and building so many LEGO creations. This week, he is most looking forward to hunting for Easter eggs, jumping on the trampoline at home, and playing with his brothers.

These delays mean that while we had hoped to be done ahead of Ezra’s birthday on April 23, we now won’t be done this cycle until May 9 – if he is able to continue with treatment after the Easter weekend.

Visitors and making counts

At the end of last week Ezra and I welcomed my sisters and my youngest niece to Edmonton for a couple of days.

On the Friday that we picked them up from the airport, Ezra told the nurses that “Today is a big day.” He went on to say that he was starting the day at the hospital for blood work, then going to the airport to pick up his “people,” and finally eating pizza for supper.

If you guessed that his excitement level was greatest when talking about the pizza, you would be correct.

However, Aunt Lyndsay and Aunt Michelle quickly won him over. He spent four days playing video games with them, building LEGO creations, and being dragged on short adventures. He also adored having baby Emma around. I quite often found him playing his video games sitting next to Emma on the floor. He would shake one of her toys or hand her her soother if she made a sound that sounded anything less than super happy.

After we dropped Aunt Lyndsay off on Tuesday (Aunt Michelle and Emma left on Monday), Ezra said with sadness “Now I am going to be alone again.”

He truly enjoyed having his aunts here to visit.

Regarding his treatment: Ezra had blood work last Friday that indicated his counts were too low to start chemo as scheduled. This meant we delayed one week and tried again today. The results of his blood work today indicated that while his blood is recovering, it’s not quite where it needs to be.

Our current plan is to test again on Monday and move forward with chemo if he meets counts then. If he can start, we will have a few weeks with nearly daily weekday treatments. Most of the chemos he will take during this time he has had before, with the exception of one at-home chemo.

We continue to appreciate your prayers and would specifically ask that you pray Ezra can start chemo again on Monday. We are eager to finish this cycle and each delay not only prolongs our stay in Edmonton, but also means he’s going another week without treatment.

UPDATE: Ezra’s blood work was still not quite where it needed to be to start chemo this week. This isn’t what we wanted but does mean that with near certainty we will resume his chemo next Monday. Until then, he and I will do our best to enjoy a few more quiet days away from the hospital.

Ezra has been feeling good. He had a lingering cough for close to two weeks that has finally resolved. Despite that, his cough didn’t really slow him down. Also gratefully, despite being very neutropenic, he never developed a fever while his body battled whatever bug or virus was in there.

While his (predominately dirty blonde?!?) hair started to grow back in January and February it is now nearly all gone again. It’s funny to watch him process the hair loss for the second time. He was feeling pretty awful the first time and while he knew it was happening he didn’t really take it in. He’s now feeling his head and noticing (and giggling about) how smooth the bare patches are where his hair used to be.

Now that the weather is finally leaning towards Spring, I am happily spending a bit more time outside. The place we are staying has garden beds that require some spring clean up. As there’s no place I would rather be than at home in my own flower beds, I think once things have dried up just a bit more I will likely spend my time cleaning up the beds around this house.

Ezra also finally realized it’s nicer out now and today was the first day I saw that he also enjoyed being outside again. With a nice green space close by, and a school playground to use after school hours, as well as a nice backyard, we have lots of places close by to soak up all the sun’s warmth.