Delayed again

In my last update I mentioned that we hoped to start maintenance chemotherapy, and today I am writing to tell you the same thing.

Ezra has now done two lab pokes to see if his blood levels are ready to start the next cycle. While we expected the first blood draw would not reveal favourable results, we cautiously hoped the second blood draw would have us on our way.

Well, the clinic called me about an hour ago to say we are still in a wait and see hold. Ezra has now been without chemo for four weeks. We are going to try again for next week and go from there. That will make five weeks without chemo, a three week delay in treatment.

This is becoming the norm for Ezra.

Our oncologist has reassured us that there is nothing concerning about Ezra’s blood work, he is just taking a bit more time than what’s typical to recover. The only downside is that Ezra remains neutropenic for longer periods of time, making him more susceptible to bacterias, fungal infections, and mucositis. It also means we need to continue to isolate our family as much as possible.

Please pray that Ezra’s next blood draw would reveal results that enable us to move forward with his treatment plan. While he’s okay right now, long delays aren’t favourable.

As a family we are enjoying the onset of summer. Elijah is playing minor ball this year and Elliott still thanks God in his dinner time prayer that Mommy and Ezra are home. Regarding minor ball, if you have never watched a bunch of 7 and 8-year-olds who have no clue how the game of baseball works play a game – I highly recommend it. Many, many, funny moments.

We also spent the weekend with Cody’s family to celebrate Elijah’s birthday and just have some fun together. Then, on Sunday, I submitted news articles to my publisher for the first time since February. We finished the weekend out by cutting the grass and resetting the yard for the week to come. At one point I caught myself enjoying just how normal this all felt. I can’t wait to experience a lot more normal in the weeks to come.

Just enjoying time at home

For the last two weeks we have been busy enjoying our time at home. Ezra did have an appointment in Edmonton last week on Monday, but he and Cody were gone just two days.

They did have to stay in a hotel during this trip as the Ronald McDonald House was full. While we are trying to keep our stays in Edmonton as brief as possible, even one night in a hotel each month adds up quickly. For this week I have arranged back-up accommodations at a place called Papa Ken’s House, which is run by the Kids with Cancer Society. If we can’t get into RMH, we should be able to get into Papa Ken’s, which will help with the expense of each trip to the city.

Each Stollery appointment means we have to pay for a daycare space for Elijah (when he’s not in school) and Elliott for one to three days. We also budget for food, gas and accommodations. It certainly adds up quickly.

Ezra did require a blood transfusion during his last appointment, which was not unexpected. His complexion was exceptionally pale and we knew he was still in a recovery period post-chemo.

Since Monday, Ezra has felt great. No more unexplained bruising which indicates his platelets are recovering. His white blood cell count was still below 1, which meant he was still neutropenic.

He has an appointment to do bloodwork tomorrow morning and then we wait to hear from the clinic about whether he has recovered enough to begin maintenance chemotherapy. I am not expecting him to make counts tomorrow, based on how long it has taken his counts to recover in the past. If he doesn’t make it this week, we will try again next week.

During our weeks at home we have celebrated Elijah’s birthday and completed a lot of yard work. I have stained 2/3 of our deck and we set up a new sitting area. We decided to use our tax return this year to buy some patio furniture and a gazebo for the deck. Our backyard is HOT in the summer. We have no big trees and the house does not cast a shadow on the yard until well after supper time.

Ezra’s treatment has made it so that we need to limit his exposure to the sun. This is going to be tricky for a kid who previously lived outside in the spring and summer months. Ezra’s skin was always just a bit darker than the rest of ours and he tanned beautifully in the summer months. This year, I think we are going to use more sunscreen than we have in the last three years combined. But, our new shaded sitting area has already created such a nice space for him. He declared just today that it’s the best place to sit on our property.

I have also put a new layer of mulch on all my garden beds. It’s exciting to see all my perennials and shrubs start to grow once again. I have also started to plant our vegetable garden. Ezra was diagnosed last year just before the vegetable garden was ready for harvesting. Between Cody and his mom, things got picked and used and stored. But the weeds had badly overtaken a majority of the space. Earlier this week I spent a couple of mornings pulling weeds and preparing the garden for planting.

After spending 3/4 of a year in other people’s spaces, without access to my own backyard, I don’t think I can accurately describe how healing it is for me to just sit and stare at my freshly edged gardens. To pull the weeds in my vegetable garden, to plant my own seeds and bulbs.

As we prepare for another week and another possible trip into Edmonton, I am taking time to be grateful for how far we have come. Ezra is doing well. We are at home.

Nearly done with frontline treatment

This day felt like it would never come. Yet, here we are. Ezra has completed all the chemo for the cycles in frontline treatment.

What that means is that he is done with frequent clinic visits, and daily chemo through his IVAD. He is now headed into about two years of maintenance treatment cycles. between steroids and at-home chemo, Ezra will still be taking a lot of medications. The difference is that these can be taken at home.

We also packed up our lives in Edmonton and brought everything home! It’s not impossible that we will end up in Edmonton again for an extended period of time, but if we do that’s because something has gone wrong. Right now, the longest we will have to stay in Edmonton for planned treatment is one week.

After spending the majority of the last nine months away from home, the idea of spending just one week in Edmonton feels easy peasy.

Amy’s House

For the last 2.5 months Ezra and I had the privilege of staying at Amy’s House in Edmonton. I cannot say enough good things about this place. The people who run it are truly rooting for each person who stays there. The house is cute and comfortable. We absolutely loved our time there. I would recommend this home to anyone needing to relocate temporarily to Edmonton for treatment.

What’s going on now

When Ezra finished chemo on Monday, his blood work showed he needed a blood transfusion. Fortunately the clinic was able to arrange this for Monday, and we got that done before heading to Grimshaw on Tuesday.

We left the city knowing that Ezra was very neutropenic and had a very low platelet count. We knew what to watch for, and we knew what to do in the event of an emergency.

On Wednesday night I noticed a bruise and scratch on Ezra’s head and he could not tell me where he got it. I then lifted his shirt and sure enough he had some petechiae on his chest.

I called the clinic this morning and we got some blood work done. No surprises here, his platelet level had dropped to below 10, which meant he needed a transfusion. At the direction of the cancer clinic we headed to the hospital in Peace River for a transfusion.

Once there we hit a small hiccup in the plan, Peace River had no platelets at the hospital. The closest hospital with platelets was Grande Prairie and they only had one unit.

After some back and forth between the doctor in Peace River, the oncologist in Edmonton, and the Grande Prairie hospital, we were told we would be able to receive that singular unit of platelets in Peace River. It was our choice if we wanted to wait at the hospital for them to arrive, late tonight, or come back in the morning.

We chose to head home. Wrapped Ezra up in hypothetical bubble wrap, and we will head back right after breakfast in the morning.

The oncologist reassured the Peace River ER doctor that Ezra was not an emergent case. He does require platelets ASAP but he is considered to be stable. This is supported by the fact that unless you also saw his bruising and knew he had cancer, you wouldn’t be able to tell what was going on by looking at him.

He’s had so, so much energy. His hemoglobin was 63 on Monday, it’s just 85 today. Anyone who has had numbers like this knows how Ezra should be feeling.

What’s miraculous is that he is still his spunky, funny, full of energy self. He’s not napping, he’s eating and drinking well, and he’s keeping up with his brothers.

Providing all goes well at the hospital tomorrow morning, Ezra will be able to stay in Grimshaw until Sunday when he and Cody head to Edmonton for one night for a scheduled appointment. He can then come home until his blood recovers and we can officially start the first cycle of maintenance.

Once started, maintenance means we will go to Edmonton every 28 days. In between, we can be at home. This feels so, so good.

We are so ready to start navigating this life at home. There will be challenges. We do have to figure out what we are comfortable with. But we can do that, together, as a family.