Warmer Weather

Fever

The last weeks have been both calm and frantic. Alice had a fever two weeks ago. They consider a fever to be a medical emergency, since Alice’s ability to fight infections is inhibited because of her treatment, it is important that she be assessed and bloodwork taken, to see if she needs antibiotics. And if she does need antibiotics, it’s important that she receive them within an hour of learning about her fever, so the viral or bacterial infection doesn’t just run rampant. Luckily, Alice’s counts were high enough that she didn’t need any antibiotics, and the doctor explained we could just go home, and if she still had a fever 24 hours later, we would have to bring her back to the hospital (which we had to do, and we were sent home again the following night, after which the fever went away).

Responding to the fever issue was new for us and Alice. We had been lucky that she hadn’t yet had one. We haven’t been heading out to shop for ages. We get most of everything delivered. Costco, Lowe’s, groceries and Amazon - it’s amazing how little you really need to leave the house. So we’ve been doing a good job at reducing our risks for all kinds of infections by doing this, but despite it, Alice still got a fever. It could have been simply from her own bacteria - that’s what doctors explained.

The fever experience reminded us forcefully of the fear, anxiety and loss of control that characterizes this whole experience. We went for a few months of settling into a routine of hospital visits and meds. The two month phase of treatment we’re in is coming to an end at the end of May, and it’s been a nice break only having to go into the hospital every ten days. But the fever reminded us of all the uncertainty that remains, and pops up from time-to-time.

Covid

Starting this week, each time Alice goes to SickKids for a lumbar puncture (about every month or so) she has to have a Covid swab the day before, so that the team of clinicians doing the LP know if she’s an asymptomatic carrier in case they have to use oxygen on her (in which case the virus could become aerosolized and spread). 

Because Alice’s LP is on a Monday, we have to go to SickKids on the Sunday morning before, so Alice can get a covid swab, and they’ll know the results the following morning for her procedure. They’re taking a lot of infection control precautions at SickKids, especially because they had a minor covid outbreak a couple of weeks ago. It’s just too bad we can’t go to Credit Valley for the swab on Sunday, it’s so much closer.  Because it’s the weekend the clinic is closed, and we’d have to go to the inpatient unit for the test, and they might be busy.

Feelings

It’s been a hard while with everything happening. The additional stress of covid on top of everything else that’s going on, trying to run a house, school, outdoor time, and self care. We’re doing our best, though, and the kids are happy, and playing together more and more, which is really nice to see. We camped out in our pop-up camper for four nights while it sat in our driveway. It was such a nice get away - feel very grateful for that chance. I’ve also started a couple of mindfulness courses, to help deepen my awareness of my feelings and thoughts to help move through these times, with a better appreciation for the present. It’s been very eye-opening, and even if you don’t take everything away from the courses, there’s enough take-aways that have you thinking, doing and approaching feelings and situations differently, in a way that’s more neutral and calm, and feeling good. It’s been helping. 

We have great weather around us most days now. The air is warmer, the sky is brighter, and the days are longer. I will remember this as we travel through the hard couple months ahead. The next few months are what we need to experience so everything after is possible. The sun and warmth of the summer serve as a reminder of the sunny days ahead -- for all of us. 

Pictures

Thank You

Thank You

Thank you! With your help, we exceeded our goal of raising over $10,000 for SickKids Hospital in Alice’s honour. In times of darkness, light abounds - thanks to you and our community. 

I wanted to take a moment to thank each of you who decided to donate to this cause during a time of uncertainty and change. A community came together to help ensure children would continue to receive exceptional care at SickKids. With the possibility of work hours being reduced because of the Coronavirus, many of you still dug deep to donate. Despite smaller paychecks for many education workers because of important job action to protect the education system, you still donated. Despite all the costs of modern society - and there are many - you thought it important to donate to this cause. These actions are not lost on us - indeed, they have provided us with much support and reassurance, more than the total donations ever could. 

There has been other important help we’ve been fortunate to receive. Family from Ottawa visiting to help raise our spirits, cleaning our house, doing laundry, and give us an opportunity to go out for a coffee, - this was a monumental lift. Our immediate family who has helped at all hours of the day with meals, childcare and groceries. Alice’s teacher, who has been nothing short of amazing, has been an exceptional support for Alice and our family, and has helped put Alice on a trajectory of life-long learning curiosity that is helping her cope with the emotional toll of being diagnosed with cancer, and now, staying at home with our family.

MoHey re than anything, I wanted to both thank and remind everyone of what’s possible when we come together to accomplish important work. We support each other during times of need. We get done what needs to get done, to help each other feel better, and help make sure no one gets left behind. During times like this, where so much is out of our control and when fear can sometimes take over, please remember the positive impact your actions can create, and find solace in knowing the difference you’ve made, and can continue to make, particularly in challenging times. 

What we’re up to

Thank you so much. We’re staying home, enjoying each other's company, and making the best of the current situation. We’re now having to go to SickKids every 10 days for Alice’s next phase of treatment. We start this coming Monday, and we’ve been told to expect a long day at the hospital. Alice will need to have her port accessed, bloodwork done, meet with her oncologist, wait for her two different kinds of chemotherapy to be administered by IV, and then we’ll get to go home. There’s usually a pretty long delay from the time we see her oncologist until they give the ok to the pharmacy to prepare the chemo, and it’s ready and sent up to the clinic.

We’re only allowed to have one parent attend the hospital with Alice during her treatment because of visiting restriction changes at SickKids. As well, they have stringent screening in place at a limited number of entrances.

COVID-19 and Chemotherapy

COVID-19 and Chemotherapy

The last few weeks have been a whirlwind. Navigating what we do while Alice remains immuno-compromised. What’s the right balance between trying to ensure as much normalcy for not just Alice but our whole family and taking steps to protect her? I feel like our enhanced hygiene and cleaning routine at home to help protect Alice from infections has been reinforced with the need to also protect against COVID-19. It’s nice to know that others out there are also doing their part cleaning for Alice now, too! All kidding aside, for the past few days, I’ve gone between trying to avoid and eliminate all risks that Alice might face, to taking a more balanced, reasonable approach to try and reduce risk as much as we can. It’s a big shift mentally for me. It’s helped me shift from that “fight or flight” mindset that depletes my mental energy and creates so much stress for me. 

Today, Saturday, has been a much better day. Alice had a friend from school come over for a few hours, and Alice was excited all morning for her to come. Even after she left, her energy and excitement were off the charts. We were laying in bed and she couldn’t stop giggling and silly. All afternoon and evening - what a nice treat and escape from the realities of the world that sometimes feel too strong to bear. I went out for a walk with Louie and Lily this afternoon, and we bumped into another family from school whose kid also was diagnosed with cancer earlier this year. How serendipitous, really. I hadn’t had a chance to be introduced to the whole family yet, so that was a really nice treat. Once home, we watched some movies, ate dinner in front of the TV which is my favorite. Once thing I made a point not to do today was spend too much time looking at the news or social media. Yesterday I let myself look at it unrestrained, and my mood was terribly negative and pessimistic, and filled me with worry and fear. Today, I can’t even begin to tell you the difference. I’m trying to spend more time doing things that make me feel good. 

We’re back to the hospital on Monday for Alice’s third lumbar puncture for this phase of treatment. SickKids called to say they’ve changed their caregiver policy for outpatient visits - to help reduce the number of people passing through the hospital, they’re now only allowing one parent to accompany a child to outpatient visits. Despite it being a procedure, I’ll be the one to go. I appreciate the change - anything we can do to help minimize the risk for the higher risk portions of the population the better.




Consolidation phase started and thoughts

To update from the last post, Alice’s counts had all come back up on Monday - we were just waiting for her absolute neutrophil count to increase, and it had more than doubled where it was last week so she was able to start treatment on Monday. We’re back at home and settled for our return on Monday next week. It will go ahead - the need for her counts to increase was only necessary to start this next phase of treatment. The only reason they’ll check her levels again next week is to see if she needs a transfusion of platelets or hemoglobin.

Alice has now visited her class this week and last week for an hour and a bit each time. She’s really enjoyed going back to school to see her friends, so we’re going to try and keep this going, increasing time as much as we safely can. The care team at the hospital strongly encourages her to go to school to maintain as much of a sense of normalcy as possible. She’s continuing to love her teacher’s visits through the week for homeschooling too - she keeps saying how lucky she is to have Mrs. Araujo as her teacher - we all feel the same way, Alice!

Despite being home away from the hospital last week, and Alice’s energy levels returning, it’s been emotionally difficult. The down time has allowed more time to be still. No rushing from appointments has caused some quiet. The thoughts come in, and you end up sitting with feelings and all kinds of thoughts, many of which are new and uncomfortable. Alice’s hair has really started to fall out, and every morning needs to be brushed and cleaned up. It’s the hardest part of the day, first thing, staring right at you. Her cancer, starting right at you. We knew that this would come, and we filed it away under “no problem, necessary to treat her”. Now that it’s here, it’s totally different. On the one hand, such a superficial thing, but on the other, such a symbolic transition. It’s not easy and my stomach bottoms out just thinking about it all as I write this. She wants to hang on to her hair for as long as she can, so we leave it, because she wants to. When she’s ready, we’ll give her a trim, and it’ll be easier, but in the meantime, each morning and each day, well, we’ll get there.

If there’s one point I want to remind myself, and as I think about it maybe the timing is good - a friend of mine from work who went through cancer and is two years out of it all now, finally got her hair back to her pre-cancer colour and condition on Friday last week, and she was so happy in the pictures and in the text messages. Great timing, and an even better reminder.

Time to reflect?

This past week, without having the rush of appointments while we wait for Alice’s blood counts to increase before her next round of treatment, we had a normal return to the house. No appointments for the week. No visits to the hospital for 7 days. It was the first time we have experienced this kind of calm since Alice’s diagnosis. It was great to see Alice’s energy return. Her amazing teacher came and did a homeschool session on Saturday morning, and Alice was looking forward to it all morning. She was so happy playing with her sisters and the neighbours on the weekend. Lily made a fort that the kids were calling a motorhome, and they we travelling all the way to South Africa from Thailand? Sure!

But with the new quiet, the mind no longer has the distractions of all the appointments to keep itself busy. It has time to think. And dwell. And go places that aren’t always helpful, but perhaps are necessary to go, to get through to the other side. It wasn’t necessarily the best weekend for me, but they will come, I’m sure. And from what I’m learning, it’s ok to hold different feelings in your heart at the same time.

Now we head off to the hospital, early in the morning Monday, and hopefully get her next round of treatment started today. Wish us luck.

The Waiting Game

This past Monday we went to SickKids for Alice’s first day of her next treatment phase, called consolidation. This phase focuses on treating the CNS to ensure relapse doesn’t occur here, since blood-based treatment doesn’t cross the blood-brain barrier. This treatment requires that Alice go to SickKids for three weeks in a row to have a lumbar puncture and have chemotherapy administered intrathecally into her spine. This means she has to fast and go under for this quick procedure. It means hungry mornings and waiting to be cleared to go for treatment.

However, before they start this phase, Alice’s bloodwork levels have to be high enough and demonstrate recovery from the first phase of treatment. They don’t want to damage her bone marrow too much with treatment, so they want to see that her bone marrow and it’s ability to produce healthy cells have rebounded sufficiently before having to experience additional treatment which further damages it.

So we went in Monday, had her port accessed, they took blood work, and we learned that 2/3 of her key levels had rebounded sufficiently, but one was still too low to begin treatment. So, they sent us home, and we go back on Monday to hopefully start treatment again. It’s been a nice week at home with Alice’s energy levels also picking up. This positive news is tempered by the fact her hair is now more quickly falling out, and she remains a bit tentative on her feet, with her strength still significantly lower than it was before, thanks to the steroids that she’s now off (thank goodness).

In other news, Alice has started homeschooling this week. She’s eligible to recieve 3 hours of at-home instruction. Her home teacher has volunteering to do this, so she comes over twice a week for 1.5 hours each visit to provide 1:1 instruction for Alice. It’s great to have Alice back into her school work with her energy level back up.

As well, we’ve been set up to have the cancer clinic at Credit Valley Hospital in Mississauga be our satellite site for low-risk treatment and other more routine treatments that don’t need to be administered at SickKids to make life a little easier for us. In different phases of treatment in the months to come this will be really helpful for us, to be sure.

Also, Alice lost her first tooth the other day while we were getting some treatment at the day hospital at SickKids. Oh the memories we forge while on this cancer journey!

Alice's Journey - An Irregularly Updated Blog

Day 29 Update

We received some very good news about Alice in recent days. Day 29, which is a big day for newly diagnosed leukemia patients, is when doctors learn the final piece of information needed to place Alice within a risk category and corresponding treatment plan. 

The treatment of Alice’s leukemia, which is called b-cell acute lymphoblastic leukemia (“ALL”) and is known to be the most common type of childhood cancer, takes place over a number of different treatment phases. Within ALL, depending on a number of different factors, including the specific genetic mutation of Alice’s leukemia cells, whether there are any leukemia cells within the CNS, and after the first 29 days of treatment, the percentage of detectable leukemia cells remaining in the bone marrow aspirate, doctors place each patient within risk categories.  Following Alice’s bone marrow biopsy on Wednesday, we learned on Thursday afternoon that Alice has less than 0.01% leukemia cells remaining in her bone marrow. This is the most sensitive measurement available - and she has no detectable leukemia cells! remaining after what was a pretty aggressive treatment phase they call induction. If there were some cells detected, then Alice would be placed into another risk category, and would receive a more aggressive treatment regime.

We’re happy with this outcome - with this news, all of Alice’s indicators have put her in the most favourable risk profile for her leukemia. Our oncologist has explained that Alice has an “excellent, excellent, chance of cure”. We’re grateful. 

With day 29 over, this also means that Alice has been able to stop taking dexamethasone - a strong steroid that brings with it a number of unpleasant side effects. Intense grumpiness, tiredness, water retention, stomach pains, muscle loss, and challenges maintaining coordination. Since having her last dose on Wednesday, we’ve noticed big improvements in her energy levels and mood already - it’s amazing to see our old Alice returning after a month of being very lethargic, distant and not herself.

We’ve started a fundraising page for SickKids hospital in Alice’s honour, and we’ve been humbled by the support we’ve been able to garner - thank you so much!

http://my.sickkidsdonations.com/hereforalice