Leukemia loses another battle – Isla Niamh Hall pulls off an upset

DISCLAIMER:

 

This will be long.  I write 5 minute blog posts for single day weddings, so don’t expect this to be short.  However, I will write a little summary at the end, right after the photos, for those of you who would rather a synopsis and not all the details.

 

FOUR.  It is such a small number. 4.  Yet 4 means so much to me. I have lived nearly 9 times that many years. 9 times as long as Isla so far. At 3.5 we didn’t know if 4 would happen, yet here we are just over a month past June 2nd, 2018. Isla’s birthday. She has made it to 4, her soccer Jersey number from last summer. Time to celebrate.

 

If you are reading this, you probably know a bit about why this birthday was so important, but in case you’re coming in blind, or you aren’t immediate family, let me fill in some of the blanks.

 

It all began with aching legs. The symptoms that is.  After a morning at pre-school, Isla told me her legs were sore and it hurt to walk.  She seemed to be in a lot of discomfort so I decided we would skip afternoon gymnastics.  Isla was on board with the idea until about 15 minutes before gymnastics started so we rushed to get ready and made our way to the gym, arriving a few minutes late.  I carried Isla in and we got her down to the gym floor where she said she was fine enough to go join the class.  As she ran out on the mats, her legs buckled.  She tried again but just couldn’t seem to walk. I picked her up and we went home.  I had never seen her do this before but I wasn’t too concerned, I thought maybe she had twisted her knee at some point, or it was growing pains, or something to that effect.  She continued  to have aching legs and started to feel unwell too.  2 nights later she woke me up in the middle of the night to go to the bathroom.  She looked at me and said in a panicked voice “my tummy! my tummy!” I tried to figure out what was wrong, but it was a feeling she didn’t know, then she threw up right on me in a moment that surprised both of us.  That was the first time she had thrown up since our trip to Jamaica a couple years earlier when the whole family was sick.  No-one else was sick this time.  It was then that we decided to get her checked out.

 

Since we were leaving on a trip the next day, we had to take her to a walk in clinic rather than our normal doctor.  We went in, the doctor looked at her ear and said it was an ear infection.  He didn’t even address my concerns about the legs or throwing up.  We were in and out of the room in about 90 seconds with a prescription for amoxicillin.  Isla hated the banana flavoured medicine which I had fond memories of from childhood. Apparently Robyn also hated it as a kid.  We gave her some honey water as a chaser to help her take it. It was a struggle every time and I was so glad when it finally ran out.

 

We flew to Ontario for a wedding and Isla barely wanted to play with her cousins when we got there, she slept a lot more than normal too.  A few days with family and we departed for Scotland.  Isla threw up on one of the flights on the weekend, I just can’t recall which one.  When we landed in Glasgow, Isla thought she might be sick, so we waited on the plane for everyone to get off before leaving.  We had brought a stroller for Autumn, but it was Isla that we ended up pushing.  We thought she would be walking and pulling her little suitcase, so carting our bags around while holding Autumn and pushing Isla was a challenge.  Full credit to Robyn for pushing that stubborn stroller while holding Autumn, that thing is difficult to push with 2 hands, let alone one.

 

Glasgow was basically a jumping off point for us as we planned to be there for the day and then head out.  From our hotel we tried walking about 200m to a restaurant and Isla was so frustrating.  It was such a short walk but she was not willing to walk, and at one point she screamed at us with a visceral scream like I had never heard before.  We thought she was having a tantrum, something she simply didn’t do.  We knew she had an ear infection and was feeling unwell, but this reaction from her was off the charts.  To top it off, the restaurant we went to was closed when we got there, just for the span between lunch and dinner, so we ended up picking up some food from a grocery store.

 

Our Scotland family vacation was meant to be our last big adventure before Robyn went back to work after her maternity leave. We planned to go on hikes, to visit castles, and to spend quite a bit of time outside.  For the first time in our lives, we actually packed well and had the right clothes for Scotland in the fall.  However, we ended up pretty much doing a driving tour of the country.  Isla slept a lot through this time, something we chalked up to her ear infection and jet lag.  One day Isla slept about 20 hours and we knew this could not be attributed to jet lag or her ear infection, this was unusual.  We talked about, and even looked into walk in clinics in Scotland but instead made arrangements back home to visit Isla’s doctor about 5 days after our scheduled return home.  Isla was barely eating and what she was eating wasn’t great.  She had a meltdown one day because she wanted to eat nothing but Salt and Vinegar chips all day and we said no, it’s a good thing as I will explain later.

 

While getting the kids ready for bed at a B&B in Ayr near the end of our trip, Isla looked at me, and with that same urgency as a couple weeks earlier, she said “my tummy, my tummy”. I asked if she was going to throw up and pretty much immediately after she said “no”, she did.  Flying standby 2 days later and with empty seats filling up quickly on the plane, we decided to book confirmed seats to ensure we could get Isla home and to a doctor rather than try to visit one in Scotland, despite our B&B host offering us help securing a doctor visit in Ayr.

 

We had a long, multiple-flight journey home, and after making some last minute flight changes to try and get home a little earlier, we arrived back in Halifax at 2:00 a.m. on October 27th. We drove to my in-laws’ in LaHave to pick up our dog Cinnamon and it was there, at my mother-in-law Marsha’s suggestion, that we decided to take Isla into the IWK to get checked out instead of waiting an extra couple days to see our doctor.  Marsha came with us to help with Autumn and we dropped Isla and Robyn off at the hospital and went to get groceries before I dropped Auttie and Grandma Marsha off at the house and made my way back to the hospital.

 

When I got to the hospital, Isla was in a gown, in bed.  I spoke to Robyn about what had happened to that point and she told me that they had seemed concerned and taken blood to try to figure out what was wrong.  I held Isla’s hand, something I remember thinking was just so nice to be able to do, I even took a photo as it was so rare for her to let me hold her hand.  We just sat there and waited.

 

About two hours after first arriving at the hospital, the resident came in.  He asked if we wanted to go to a different room to talk. Alarm bells went off in my head, it must be bad for them to not want to talk about it in front of Isla.  Robyn and I looked at each other and said we would stay there.  With Isla asleep by now, we didn’t want her to wake up without us by her side.  I had been thinking that Isla had celiac disease.  All of her symptoms fit with that diagnosis and at this point I thought the doctor was going to confirm that suspicion.  Two other doctors entered that room and I can’t recall what they looked like exactly, but I will forever remember the expression on their faces.  They were looking down, avoiding eye contact as they sat down, a sombre look on their faces.  The alarm bells in my head were now thumping in my chest, I could feel tears coming on even without a word yet spoken.

 

The doctor told us that Isla’s white blood count was over 100,000, which meant nothing until he said that white blood cell counts should be between 5,000-10,000, and that they think she has a blood cancer, probably leukemia. What it meant was they were going to run some tests and figure some more out, and that they needed to take her to the ICU immediately.  We went up to the 3rd floor where the PICU is located and learned a lot that night.  I made a couple of phone calls to let our parents know what was going on, I called my parents first. When they picked up, they knew it was me from call display, and I got out a ‘hi’, but then couldn’t speak.  My mom kept asking if I was there, and sorry mom, but I just wanted to tell you to be quiet in that moment so I could compose myself.  I was barely able to get the words out, and I hated sharing this news and making others upset, but it had to be done.  I made the rest of my phone calls the next day, it was a very unpleasant experience to have to say those words over and over again, but it also helped me be able to say them.  I didn’t call my grandmother as I knew she was alone and wanted someone to be there with her, especially since cancer had taken my grandpa a few months before Isla was born.  My parents drove out to see her and break the news in person.  Everyone was obviously shocked, but my family was great and offered to help in any way they could, Brandon’s immediate response was to ask if he could donate bone marrow, which we weren’t even sure would be necessary at that point.  Kevin said he would come out if he could to help as he has an office in Halifax and could do some work from there.  My whole family lives in Ontario, so no-one was close, and I wasn’t expecting anything in terms of help from them, especially since my brothers all have kids of their own to worry about. It was nice to know they were there for us, even from so far away.

 

One phone call which was surprisingly difficult was to Isla’s preschool, Colby Village.  Isla had only gone a handful of times, but she absolutely loved it. Calling to tell them she wouldn’t be returning was a punch in the stomach, a reminder that there may be some things she loves which she will never be able to do again, or maybe not for a long time.

 

Isla’s distended stomach was due to the white blood cells filling up a lot of her organs, and her kidneys specifically were in trouble.  I don’t recall what the nephrologists said exactly, but one of the problems was a sodium imbalance where there was just too much of it. So, if Isla had been chomping away on Salt and Vinegar chips as much as she wanted on the trip, we might have seen complete kidney failure, or at least been closer to that.  As it stood, the first 3 nights in hospital, we were told that the main goal was to keep her off dialysis, which thankfully they did.

 

It was on Sunday the 30th of October that we received the full diagnosis.  We were told that there were 4 kinds of leukemia they were looking at and the doctor was extremely happy that Isla’s results came back and she had Acute Myeloid Leukemia (AML) Inversion 16, as it was the best of the 4 options.  He went on to tell us that she had a 50-70% chance of beating it.  My thoughts of course went to the 50% chance part of that and I wondered, what were her chances if her diagnosis was one of the other 3 types they were looking at?  The doctor also proceeded to say that it wasn’t that she would 70% survive, it’s only going to be that she survives or doesn’t, so the statistics aren’t important. And despite us obviously knowing that, it is an important point for people to remember.  He also told us not to Google this, that the outlook for children is much better than for adults, and better for girls than boys as well, and Googling would not give us relevant information.  To this day I still have not, nor will I, Google this.  Isla’s doctors know her and her treatment, and will tell us the information relevant and specific to our child, so there is no point in searching generalities.  As the doctor talked to us and went over how treatment was going to go, he stopped a couple of times to mention how well we were taking this.  I can imagine that everyone reacts differently to news like this, but Robyn and I are both very logical people, believers in science and medicine, and while we were of course upset, in that moment we needed to know what the next steps were.  I can’t help but wonder if other parents yell at the doctors, or throw punches, or how they react in general to make so many doctors say that to us.  We learned that Isla was going to have 4 or 5 rounds of chemo, that wasn’t decided yet, and that it was going to start immediately.

 

Isla was relocated to 6 Link (the oncology floor) on Halloween.  At her request, we brought in her green fairy costume, but she ended up not being in the mood to wear it, which broke my heart.  The doctors and nurses were all dressed up, so it is kind of funny that without knowing all these people, my first impression of everyone was in costumes.

 

Halloween night is always a big deal at my brother Kevin’s house, they’re the kind of house that ends up being on the local news due to their Halloween display.  With that in mind, it was a pretty big deal to me that Kevin was not at home with his wife and kids for Halloween night, but was with me as I made sure Autumn didn’t miss out on her first real Halloween experience (she was 11 days old the previous Halloween).  It was also very helpful to me to have him with me as I used trick or treating as a way to tell the neighbourhood about Isla’s diagnosis.  This was pretty difficult as Isla is the neighbourhood’s little darling.  I definitely got emotional talking to our neighbours, but I tried to put a brave face on.  I really did find that the more I spoke about Isla, the easier it was.  It was no longer this big emotional thing to say the words cancer and leukemia, it was just our new reality, our new normal.  Autumn was loving going around to people’s houses so we stayed out longer than I had planned, and the girls got a great candy haul.

 

With Kevin in town and Grandma Marsha at our house, I was able to spend a lot of time at the hospital with Robyn and Isla while they helped with Autumn and took care of things around the house which I had planned but would never have been able to get to (high 5 for Kevin and raking up over 40 bags of leaves).  At the hospital Isla was still in pretty rough shape.  Giving us an idea of the seriousness and urgency of Isla’s condition, instead of waiting an extra day to get a central line put in her chest (Hickman line), the doctors put in a PICC (peripherally inserted central catheter) line in her arm.  We were fortunate that Isla was old enough to understand that she was not allowed pull at her ‘tubies’ as we called them.  Isla was getting poked and prodded a lot for that first little bit.  One of the first things she received was a bone marrow biopsy which left a pretty big bump on her back which took a few weeks to finally go away and was very painful for Isla. This was how they confirmed that she had leukemia.  Thankfully we learned that a bone marrow transplant was not on the radar for the doctors, they believed chemo should work. She also received a lumbar puncture around this time where they found leukemia in her spinal fluid.

 

Isla had spent a lot of time unable to walk, so the first time she left her room, it was in a wheelchair.  It was hard to see her that way as we went to the playroom.  This was probably where the social anxiety started for Isla.  She wanted nothing to do with other children.  Any time she saw another kid in the playroom she got antsy and wanted to leave.  She had previously been this happy kid who would go up to other kids and say “hi, I’m Isla, what’s your name?” without hesitation, so this new Isla was heartbreaking.

 

During Isla’s first round of chemo, she was always the first stop for the doctors on their rounds.  This meant they were in early.  We longed for the day that Isla was not their biggest concern, and that the doctors visits would be later in the morning.  We were told right off he bat that Isla would lose her hair, and that would likely start within the first 10 days.  With so much going on, and Isla being unable to have control over anything, she found a way to take charge of one thing; her hair.  She would not let us touch it.  We couldn’t brush it, wash it, or even put it up.  The nurses gave her a sponge bath while under sedation and we asked if they could try to do something about the hair situation, and they managed to wash it and braid it.  Isla was quite upset when she awoke and found her hair damp.  It quickly became matted and after talking to Isla about it, we eventually convinced her to let us cut it off.

 

Cutting Isla’s hair was a big moment.  Suddenly our little girl looked like your stereotypical cancer patient, she looked sick.  I actually didn’t take the haircut too hard, though I know Robyn felt differently.  People have always said that Isla looks just like me, so to see her with her hair buzzed made her look like I did as a kid and I think that made this transition easier.  She really looked a lot like me (poor girl).  It wasn’t long after this that the pity looks started.  In the hospital people are pretty good, though outside of the hospital people stare, people say things to you, people try to touch your child and say things, and come on, I don’t want people touching my child that has no immune system.  If you see a kid whom you believe has cancer, just leave them be.

 

The chemo was having an effect on Isla and she was throwing up a lot, and she absolutely hated seeing us reach for the bowl to throw up into.  She would get angry with us, and sometimes push the bowl away saying that she didn’t need it, even though sometimes she did.  Her skin was changing colour as well, which became extra obvious when she had a major complication.  Isla started looking red over areas of her torso and it started getting worse.  It looked like she had burns.  Her team eventually diagnosed her with something called Staphylococcal Scalded Skin Syndrome (SSSS) – a very rare type of Staph infection that has the appearance and symptoms of your skin being scalded all over.  Around the same time (I can’t recall which came first as they were going on simultaneously), Isla developed sores on her inner thighs.  They started off like her skin was bubbling and full of puss.  On her left leg it eventually popped and went away, while on her right leg it got worse.  It became an open sore growing on her leg, about the size of a toonie, which as it healed became a large protrusion.  They put medication on it to basically try to dissolve the sore as skin would never grow back over it.  I didn’t know until this point that skin can not grow up over a bump, only across an even surface or down a valley.  The sore took weeks to heal and has left a scar which will likely never go away.

 

Isla’s SSSS resulted in the introduction of many new people into our lives.  We met Infectious Disease doctors, the Pain team, plastic surgery, and even the burn unit as they wrapped Isla.  We also needed to go back down to the ICU for a few days, as they needed to increase pain medications to the point where the doctors were concerned that she may stop breathing and require a ventilator.  On one of the nights there I experienced my scariest moment since diagnosis.  As Isla lay in her bed in the ICU, her breathing rate slowed to only 6 breaths per minute and a serious conversation started about intubating her.  Doctors were called in and for a long time they just stood in the room watching her.  I don’t know if it was founded, but I wasn’t sure she would make it through the night.  She kept crying out in what we felt was a panicked cry, she just couldn’t settle.  This went on for hours.  She had been given a lot of hydromorph and morphine for pain, and there we were in the ICU and she seemed no better off than when she was up on 6 Link. The doctors talked about giving more of the same meds, but given their concerns that Isla may stop breathing as a result, Robyn was having none of this. She explained how we thought it wasn’t pain causing the problem at that moment, but rather stress and agitation, and she just couldn’t settle – even unconscious, she was just unable to relax.  At that suggestion, a couple hours of stress and worry ended with backing off of the pain meds and Isla receiving a sedative instead. Within a half hour, she had relaxed and fell into a proper sleep and began breathing normally again.  We as parents slept that night in the ICU with Isla, Robyn in Isla’s bed, just like she had been since day 1, and me in the chair.

 

Two days later, we got to head back up to 6 Link into what felt more like home.  We knew this was a serious occurrence, but it really hit home when a few different doctors came into the room and gave us hugs and expressed how happy they were to see Isla back up on the floor.  They all genuinely seemed relieved. We were fortunate to move rooms around this time as well, to a room with 2 doors.  These rooms have that added protection of an isolation room which basically has what we call a porch with air filtration, they like the AML kids to be in there, and with the 2nd door, we heard less hallway noise, and much preferred being in there.

 

As round 1 neared a close, we learned that we might get a couple days at home between rounds, something we were told could happen, but not to expect it.  Isla got her catheter out and we did indeed get to go home, it was such a weird feeling.  My sister in law Courtney was in town at the time and it was nice for Robyn to have someone to hang out with while home other than just me.  We had four days at home, though we spent half of that time back at the hospital for scheduled things, including having day surgery and getting Isla’s Hickman (chest) line put in.  She also had a bone marrow biopsy.  We were told we would get those results when we came back on the Monday morning.  We had setup the Christmas tree while Isla was home, and some neighbours with a great Christmas lights display had just turned their lights on that weekend, so we went out to look at them 2 nights in a row.  Sunday night, Robyn and I just sat around stressing about the results of that test.  This was the all-important result that would tell us if the chemo was working or not and we couldn’t help but be worried.  I don’t know if either of us slept much that night.  We wondered if that would be the last night Isla ever got to spend at home.

 

At the hospital for round two, we didn’t get those results on Monday, so we had to wait another day which was stressful.  The doctor gave us some good news though when we did find out, he said the biopsy came back clear, so no visible leukemia.  He stressed that it didn’t mean it was gone, just not visible.  He explained using what I thought was a good analogy.  He likened it to dandelions on your lawn.  You first spray the lawn with chemicals and it looks like the dandelions are gone, but if you do nothing further they just pop back up, so you need to do more, chemo round 2, you spray the lawn again and most of the dandelions die, but there are probably some still present, so round 3, you spray again. This time you’re sure most are gone but just in case, you do it another time, round 4.  Positive now they are all gone, you hit it one more time, with stronger chemicals than ever, to make sure they never come back, chemo round 5.  So with one round down and some good news, Isla started her second round of chemo.

 

Round 2 saw us meet the physiotherapist to help Isla walk again.  She went around 6 weeks without walking more than a few steps.  It didn’t take long before Isla overcame her fear of walking and took some hesitant steps.  She was quite weak and it took a long time to walk fairly normally.  Round 2 was also when we first experienced c. diff.  Isla was put on isolation and we had to wipe down everything Isla touched at the end of every day with special wipes called rescue wipes.  They smelled like methane and would burn your hands if you didn’t wear gloves, or if your glove ripped like Robyn’s did once. This went on for around 2 weeks, and at the end of that time, we needed to switch rooms so they could do a terminal clean of the room.  That required EVERYTHING in the room to be wiped twice with rescue wipes, and all fabrics to be washed a couple of times.  Thankfully the nurses helped, though it still took hours.  Setting up the Christmas tree and lights in the new room was a pain in the butt, but it was so worth it.  Isla’s favourite colours are purple, pink, and green, so I found Christmas lights in those colours to make Christmas as special as possible for her.

 

It was around Christmas that Isla first mentioned her left leg was sore, but then didn’t mention it again for a couple days.  Fevers started around this time too. Fevers are a very common after a round of chemo, but they persisted despite any IV antibiotics they threw at her, and they couldn’t really figure out why.  It was actually during the 6 Link Christmas party that Isla got her first weird fever.  She had already reluctantly met Santa and gotten a teddy bear and a book (as did Autumn), and done about everything there was to do at the party, so having to leave wasn’t a huge deal to Isla thankfully.  Christmas morning in the hospital was special, but obviously not like at home.  Most kids were discharged over Christmas, but that wasn’t possible for us.  Autumn and I spent Christmas Eve in another room on the floor so we could enjoy Christmas morning together as a family. Due to so many friends and family sending gifts for Isla, our tree was incredibly full, and the skinny tree we had gotten for her room made the present pile seem massive.  Halfway through gift opening, Isla got tired and needed to rest, and she was spiking a fever.  Despite Isla feeling pretty shitty, it was a wonderful Christmas for the girls.  The nurses were all great, though I felt bad that so many of them weren’t able to be home with their families.

 

A week later, Isla’s fevers were still coming every 4 hours, a.k.a. when the tylenol wore off, and we didn’t know why.  On New Year’s Eve we spent a lot of time getting tests done, there was an ultrasound, CT scan, X-ray.  I remember thinking about how lucky we were to be living in Canada where we didn’t need to pay for those tests, they would have cost thousands of dollars in the States just for that one day.  That was a thought I had often throughout Isla’s treatment.  I also couldn’t help thinking what would have happened had we gone to a hospital in Scotland.  Would we have spent Christmas in a hospital in Scotland?  How expensive would that have been?  Would we have had to sell our house to pay for treatment?  I am so glad that those ‘what ifs’ were not our reality.

 

We learned that the reason for Isla’s leg pain was that it was fractured.  There was a pocket of puss which had built up inside and bone and the pressure had caused the fracture.  They did 2 operations to fix the leg problem, and Isla has a badass scar on her leg because of it.  So why was there a puss pocket?  Well, during the CT scan, they noticed something on her lung and kidney.  It took some time to figure out if it was the same thing causing both anomalies, and that wound up being a fungal infection called Candida.  They had thought it was pneumonia at first, but that ended up not being the case. Hearing pneumonia in an immunocompromised individual scared me.  My grandfather had been diagnosed with cancer a few years earlier and got pneumonia and died the next day.  Now, he was in his 80s and in a far different circumstance, but my mind definitely went there.  I didn’t know very much about fungal infections so when the ID doctors said the treatment would be around a year, I was surprised.  This new complication for Isla was potentially deadly and was being taken very seriously.

 

The fungal infection, which took some time to properly diagnose, meant Isla needed a lavage, which is basically washing out her lungs with water. There was some concern she was weak and may need to go on a ventilator after the procedure, fortunately she did not.  When the surgeon came into the room to explain to us the risks, he mentioned that it was possible to break a tooth, though unlikely.  This was one of those times a doctor learned not to talk about procedures in front of Isla.  Isla heard a tooth could be broken and freaked out.  The operation went well and no teeth were broken.  The fungus had spread to other organs before treatment started and forced Round 3 of chemo to be pushed back.  They couldn’t destroy what was left of Isla’s immune system while the fungal infection was out of control, that would result in the fungus spreading and going to the brain and heart which would almost certainly be fatal.  At the end of January we were given 1 week for the infection to start responding to treatment before they were going to have to start what they called salvage treatment.  Not exactly a term you want to be hearing.  There is a bit of leeway in the treatment when a patient is responding to the chemo as Isla was, but waiting too long opens up the door for the leukemia to come back as bad as it was in the first place, so we were in a tight place time wise, but after around 3 weeks of a chemo delay, tests showed that the fungal infection was responding to treatment, and Round 3 could begin.

 

Round 3 was a higher dose chemo.  For those that don’t know, chemo basically makes you toxic.  All bodily fluids need to be handled carefully, imagine wanting to wipe your child’s tears and needing to put gloves on to do so.  We were told that this high dose chemo could cause eyes to become light sensitive, as the chemo is also excreted through tears at this dose, so they give preventative eye drops.  Well, Isla’s eyes became a bit of an issue this round.  She was very light sensitive and at one point she couldn’t even open her eyes for 2 days.  It was on one of those days that the Halifax Mooseheads visited the hospital.  Isla sat on my lap while we chatted with Moosehead players Otto Somppi, Blade Mann-Dixon, Connor Moynihan, and Cooper Jones.  Isla even got a signed jersey from Otto.  Isla was pretty chatty with the hockey players which I think was helped by the fact that she couldn’t open her eyes as I think she would have otherwise been nervous.  Unfortunately, that was the only positive from her eye sensitivity.  She was getting frequent eye drops, and for a while it was every 2 hours that she received 4 drops, including through the night.  Those nights were quite bad for sleep for Isla and Robyn.  At one point Isla was so exhausted, that she somehow slept through eye drops, even the nurse was shocked at that one.  The nights with drops every 4 hours weren’t much better for sleep either.  Isla received a lot of drops.  At one point, we were sitting in a room with the lights out, a tiny bit of light coming through the curtains from outside, and Isla still needed to wear sunglasses.

 

It was in round 3 that Isla tested positive for c. diff again and we went through that same process of wiping everything down and then eventually switching rooms.  Isolation sucks.  It’s hard to keep a kid entertained in a small room for days on end.  Isla also wound up contracting the coronavirus which is just a common cold in healthy individuals, but like anything in an immunocompromised person, it’s more dangerous.

 

One thing I am incredibly proud of is when Isla decided she wanted to have a Princess tea party.  A project she worked on with the 6 Link Child Life Specialist, they planned out her party and made up invitations for everyone she wanted to attend.  She wore her Halloween costume and they had a crown to match in the play room.  Something like 25 people came to the party (for which I made not nearly enough cupcakes) and Isla acted as host. She poured tea (apple juice or orange juice) and sometimes by herself, sometimes with assistance, brought the drinks to all her guests.  She was a wonderful little host and I think it is something that will be remembered for a long time.  After all the tough times she had, it was great to see her acting more like her vibrant, colourful self.

 

At the end of round 3, Isla got to go home for a couple of days, though we had to go back into the hospital each morning for a few hours for Isla’s IV medication.  We did all get to sleep at home though, which was a nice bonus.  Auntie Courtney was here for this return as well, apparently she was good luck.  It was also one of the only times all winter that there was a good enough snow to play in and it wasn’t freezing cold, so we went out and built snowmen and took some photos in the snow.  With Isla being sick, we hadn’t bought her any new winter outerwear, so we were fortunate that we could fit her into last year’s clothes.

 

Round 4 and 5 were more on the normal side of things.  In one of the earlier rounds, Isla started what we called preschool.  We had talked to Child Life about keeping Isla mentally stimulated. They talked to school services about Isla, but because she was 3 and not yet in actual school, they couldn’t do anything for her, so Child Life came up with an idea. We would send Isla to the playroom every day for an hour for ‘pre-school’ where she could spend some time doing a little learning, and giving Robyn a little break.  It took a while for Isla to let Robyn leave for the hour, and even once she did allow that to happen, there were many days pre-school just couldn’t happen without Mommy, or where the hour would go well for a portion and Isla would suddenly remember Robyn wasn’t there and she would cry for her.  There were also days where Isla just wasn’t up for it.  When Isla was on isolation like she was 3 straight weeks in round 4, pre-school took place in Isla’s hospital room which for the most part meant Robyn didn’t get a break.  I tried to let her get out, but most of the time Isla wanted her and would get very upset if she was gone, it was heartbreaking to hear her like that, but in general, pre-school was a wonderful thing for Isla, and we are so appreciative of the Child Life staff at the hospital who do their best to help kids think about things other than being sick for a bit.

 

It wasn’t just when Robyn left during pre-school that Isla got upset, she would react the same way if Robyn went to go get water at times, or food, or do laundry.  There was just no way Robyn could have ever spent a night at home and left Isla with me.  When Isla was first admitted, I had not once been able to put Autumn to sleep.  I didn’t know how I was going to get that to happen, but after some difficult nights, we figured it out.  So come round 4, we had our system in place. I would typically get up in the morning with Autumn around 7, we would get breakfast, play and watch a couple shows, and then she would go down for a nap before lunch.  After lunch we would head into the hospital where we would stay until around 7:00/7:30. My hope was that Autumn would fall asleep in the car on the drive home, though that didn’t happen all the time, it was much easier for me if she did.
Isla’s 4th and 5th round saw her have more reactions to blood products and medications, including one day where I entered the room and she looked at me and the left side of her face looked like Sloth from the Goonies.  Before I could even say anything, Robyn said “she’s getting IV Benadryl right now”. The nurse sat with us for about an hour to make sure her swelling went down.  Something like that can be quite dangerous as she could go into anaphylactic shock.  Isla often experienced reactions to blood products, some minor, some major, but when you receive dozens of blood and platelet transfusions, it’s bound to happen, not that it makes it any less concerning.

 

Isla continued to see physiotherapy and at one point her physiotherapist said that Isla was doing great and that she didn’t need physiotherapy anymore, but Isla could continue going as she enjoyed it and her physio liked having a patient there who was excited to be there.  In round 5 we got to go to the outdoor playground at the IWK which was a nice change of scenery.  Going outside presents some challenges as well though.  The chemo has made Isla’s already pale skin more sensitive to sunlight.  SPF 60 is already the norm at our fair-skinned house so we are used to sunlight sensitivity, but not like this.
Getting closer to the end of round 5, my parents came out for 2 weeks for the 3rd time.  It was wonderful to be able to spend extra time with Isla and Robyn, even if it was only an hour or two each day.  I often felt like I didn’t need the help, but having people come out and stay at the house really was helpful, I simply could not have spent as much time as the hospital otherwise.

 

Over a 6 and a half month period, you get to know people pretty well, so thinking about going home was a bittersweet feeling.  We obviously wanted nothing more than for our entire family to be home and under one roof again, but there was also a part of us that knew we were going to miss the hospital.  We were going to go from having around 30 nurses fawning over Isla and Autumn who they all seemed to genuinely love, to Isla and Autumn having only us at home.  It felt like we made this huge group of new friends, people who saw us at our worst and were still there and supportive.  We had genuine conversations with all these people about so many different things and we were going to miss that.  We were not going to miss all the vitals checks, the pokes, the ‘arm hugs’, the lack of privacy in the room etc., but the people themselves, absolutely.  Isla of course had her favourites, as did Autumn.  I always loved seeing the girls get excited to see the nurses at the nurse’s station.  We miss them, but we hope Isla continues to want to visit them whenever we are in the hospital.

 

Isla had her last chemo, which happened to be in the form of a couple big needles in the thigh.  From that point on we were playing a waiting game.  Isla’s ANC count (basically her ability to fight infection) needed to be at least 500 before we could go home, so every day when the bloodwork came back we were anxious to see the results.  An ANC in a healthy individual runs anywhere from 1500-8000 depending on the person.  After chemo, ANC drops to zero and then it slowly works its way back up.  Another little girl with AML had an unusually long 5th round and took something like 9 weeks to finally get to go home, so we were worried Isla’s would take that long.  We hoped simply that Isla would be able to get to be home for her birthday.  On the morning of May 9th, after a slow ANC ascent, I received a text message with a photo.  It was Isla holding a balloon and a sheet of paper saying “600”.  I cried.  It meant she could come home.  It just so happened that later that night, we were going to be seeing a Peppa Pig live performance in a Scotiabank Centre Skybox courtesy of tickets donated to the hospital, what a perfect way to top off Isla’s last day in hospital.

 

When a child at the IWK completes their treatment, they are encouraged to ring the bell to celebrate.  Isla had been present for a number of other kids’ bell ringings and each time she covered her ears saying it was too loud with the bell and the cheering.  With that in mind, I was surprised to see her excited to ring the bell on her last day.  The nurses made some phone calls and a whole bunch of people showed up to support Isla.  Isla however, was not feeling it when it came time, and didn’t want to ring the bell.  I’m not sure if it was the crowd size, or the knowledge about how loud things would be, but either way, it didn’t happen.  Most nights while an inpatient, Isla would run into the nurse’s station and ask who her nurse was for the night. She would typically walk over to a white board with a nurse who would show her the name of her nurse for the night.  This white board lists all the rooms and their respective patient and nurse.  Isla’s last room was 624 which happens to be the final room and therefore at the bottom of the whiteboard, just within Isla’s reach.  So in my mind, when Isla took the eraser and wiped her name off the whiteboard, that was her bell ringing equivalent, her moment of completion.  I had gotten emotional seeing other kids ring the bell, and I got emotional seeing Isla take her name off the board.  I love that she did it her own way, she is a strong willed little girl.

 

I can not express enough how thankful we are to have the IWK here, with its great team of people who all came together to save Isla’s life.  We are forever in your debt.

 

No doubt I will miss someone, but we need to thank a lot of people, not that a thank you is really enough. Medically, thank you to the nurses, the oncologists, the nephrologists, the Infectious Diseases doctors, the pain team, physiotherapy, dieticians, Child Life, Buddington the therapy clown, opthamologists, surgeons, diagnostic imaging, cardiologists, psychologist, dermatologists, social worker, pharmacists, and lab technicians. Non medically at the hospital, the cleaners, the sweet people at Tim’s, the gift shop, and the cafeteria, the Ronald McDonald house.  Outside of the hospital, thank you to our whole family, a lot of you sacrificed a lot to come help us out, thank you to our friends for the gifts for Isla, they were a great distraction, thank you to my neighbours for helping out where they could, especially with the shovelling (thank goodness it wasn’t a snowy winter), it was a pain in the butt to shovel with a baby, thank you for my child care helpers who let me get out and play hockey and blow off some steam and feel like not my entire life was about cancer, thank you to my hockey league and Robyn’s co-workers who raised some money to help us out, thank you to everyone who supported the GoFundMe that my brothers setup for us. Thank you to anyone who helped us in any way.  We appreciate all the help and don’t know how we would have managed without it.  I never realized how generous people were before we needed help.

 

One of the biggest thank you’s needs to go out to anyone who donates blood. The amount of blood that Isla herself benefitted from came from over 100 donors. Please, if you can, DONATE BLOOD. You can go to www.blood.ca and enter in your location and it will tell you where your nearest blood donation clinics are located.  You can also sign up to be a bone marrow/ stem cell donor there, it is easy and could save a life, if Isla’s leukemia returns, that life could be hers.

 

As Isla’s hospital stay was nearly over, I put out a sheet of paper and asked anyone who knew Isla to write down what they thought she would be when she grows up.   It’s common for us to hear people to say that Isla seemed so much older than 3, that she seemed more like a 10 year old, and that she was so smart and mature, and that’s what led me to come up with this idea.  We got some great responses and the general theme of the predictions was that people thought Isla would either be helping others (like a nurse or doctor), or be in charge (like the Prime Minister).  I hope to one day show her this list to show her that even as a little girl, so many people saw such incredible potential in her.
To say I have learned a lot from this experience would be a gross understatement.  I feel like I have a new perspective on most things in life.  I am not sure I will ever feel ‘normal’ again, and for the time being at least, I don’t expect to.  I still worry about Isla, and for a while I will probably be that helicopter parent I hate seeing around, worrying over every little fall, every little bump, or rash, or whatever may happen.  On top of that, I will forever worry about the leukemia coming back and I know that is only natural.  I still sometimes have bad thoughts about Isla’s future and needlessly get myself upset.  I take some solace in the fact that she will be followed by doctors for her whole life and will be more likely to catch any other medical issues which could pop up.

 

I would be remiss to go through this entire blog post and not mention that while we all look at this as Isla having to spend 6.5 months in hospital, Robyn also served the same sentence.  It was Robyn there for every arm hug (blood pressure), for every poke (needle), for every dressing change, for every surgery, for every time Isla screamed “I just want to go home”, Robyn was there for Isla with barely a reprieve.  I would have loved to spend the night at the hospital and let Robyn sleep in her own bed at home instead of in Isla’s hospital bed, but Isla would not let that happen.  Robyn sacrificed so much by living in the hospital.  Privacy? Forget about it.  A proper sleep schedule? Good luck.  With people constantly coming in and out of the room, especially while Isla was very unwell, you never feel like you have a moment to yourself.  So while I put Autumn to bed at home and put on Netflix to relax, Robyn didn’t really get that opportunity.  After a little time to get used to home life again, Robyn has returned to work, and I’ve taken over in my role as a stay at home dad, another adjustment period for all of us.

 

Robyn had originally planned to go back to work after her maternity leave on November 6th.  On our fridge calendar, we had written “Dustin mental breakdown day” scheduled for November 9th as a joke in regards to me being on my own with the girls all day.  We never made it to that date due to Isla getting sick, but I can assure you that after the last 8 months, I’m not too concerned about having a mental breakdown this time around.  The doctors told us that it isn’t just that Isla will come away from treatment with a feeling of being able to do anything, but we as parents went through this as well and will come away with that same feeling.  While I’m not sure Isla is coming away with that feeling due to her age and the fact that she has no idea this could have killed her, I know Robyn and I feel that there are few things we can’t overcome.

 

It’s with that in mind that we want to try to give something back and help other parents going through a similar difficult time.  Essentially we have created some shirts to celebrate children beating cancer, details can be found HERE.  It started with an idea to have a shirt for Isla to wear to ring the bell in, but with her counts coming up so quickly at the end, I simply ran out of time to get it ready.  I took to asking others what they thought of the design and people loved it.  Our friend Ashley, whose son Jude is mid-treatment for cancer informed me of the gold ribbon, and I think that was the added touch the design needed and pushed this whole idea forward.  The gold ribbon is representative of all childhood cancers and we have come up with a shirt that says Strong and Cancer Free with the Gold ribbon representing the cancer part of that equation and Strong and Free representing the Canadian part of this.  Isla is Strong and Cancer Free and I want her to wear her shirt proud, with the gold ribbon like a gold medal around her neck for winning this fight, and I would love to see other little ones and their families wearing that gold medal too.  We will be selling these shirts HERE with the intention of using the profits to help families on 6 Link at the IWK.  We have been there and we know that while the hospital tries to make it comfortable, it’s not home and things such as having good meals is difficult and a little outside help would be appreciated.  I don’t think we could ever give back enough to ever feel like we have given back enough.  We truly appreciate everyone who was there for us, and we have met and become friends with other families facing cancer and know they appreciate it too.

 

Isla is home now and doing well. She will be starting pre-school in September, as well as ballet.  I am nervous about Isla going through these things without Robyn and I, but she is an intelligent, strong willed, girl who is going to grow up into someone we hope appreciates life and it’s fragility.  There are so many things we need to do, and so little time.  While I am hesitant to celebrate Isla being cancer free, I am also acutely aware that none of us knows what the future holds, so get out there, live your life, and celebrate your victories while you have the chance, you never know how many you have left.

 

I know that was a lot of information, and I feel like I missed or left out so much, like the bravery beads which has patients getting a bead for each thing they go through, Isla’s is over 10′ long, or about how I would keep a brave face on all day at the hospital and then just cry on the drive home when I was alone (with Autumn asleep in the back seat), worrying about everything from whether she would be able to have kids one day (should be possible) to where we would bury her or spread her ashes if it came to that.  There is so much more, but I’ve hit my limit here.  I want to summarize as succinctly as possible the procedures she went through, here before the photos, so here it is;  She underwent 5 rounds of chemo spanning 6.5 months at the IWK in Halifax, where she remained an inpatient over the course of her treatment.  Isla had 4 surgeries, 4 different central lines put in and taken out, 2 GFR tests, an MRI, 4 CT scans, about 10 X-Rays, and 10 ultrasounds, about 50 blood and platelet transfusions, 2 bone marrow biopsies, 4 lumbar punctures, a lavage, eye drops over 100 times, social anxiety, re-learning how to walk, many reactions to drugs and blood products, Staphylococcal Scalded Skin Syndrome, renal failure, 30 dressing changes, a cast, a fungal infection called candida, coronavirus, c.diff twice, about a quarter of her time in hospital spent on isolation, and a roller coaster of emotions and feeling well and unwell.  I am likely forgetting something but it likely seems inconsequential at this point.  I didn’t always have my camera on me at the hospital, and I certainly didn’t take photos of everything that went on.  The following photos are a mix of photos from Robyn’s cell phone, my cell phone, & my pro cameras.  I had this at around 500 images to start, so this may be long, but has been culled pretty hard too.  Here’s a look at Isla’s journey:

 

Isla, early summer 2017 at the Fort Point Lighthouse.Isla and Autumn in August 2017, she likely had leukemia at the time this was taken.Isla’s first day of pre-school, and also my birthday, September 12, 2017Isla at gymnasticsIsla at my parents’ house October 12, 2017Isla on the left getting 2 things from her cousin Mackenzie on the right, a necklace with the words best friends, they each kept one half of the pendant, and a little stuffed animal she called Rainbow, she loved both and both comforted her throughout her treatment.Isla with her cousins, my brothers’ kids.  In colour, you can really see how pale Isla was, something which was so gradual for us that we never noticed.On our flight to Halifax from Toronto, waiting to take off.Isla feeling quite unwell sitting in her fancy WestJet Plus seat.  Isla fell asleep on me, something which hadn’t happened in ages.My girls in Scotland, you can see Isla holding Rainbow in her hand.This one is a tough one.  Isla had been difficult and we were making her walk and she wanted nothing to do with walking.  It was frustrating at the time and makes me feel incredibly guilty with hindsight.Trying to take a family selfie, Isla wasn’t too excited about the idea.This was moments before she threw up all over this rest stop.  We thought it must have been the cheese or something like that.  I had quickly run to the car to get something and when I came back in, Robyn was stuck with 2 kids and a big mess.  I had been gone no more than 30 seconds.  The Quiraing, Isle of Skye. Just a stunning landscape, Isla and Robyn went out quite a distance for me to get this shot.  Isla is blowing me a kiss in the photo.When they got back, we took this photo, one of my favourites of the three of us.This is what most of our photo attempts looked like in Scotland.We walked up a mountain a bit for this.  Isla would only agree to go if I carried her up, so I did.  Behind us is the Glenfinnan monument, and behind the camera is the Glenfinnan viaduct (think Harry Potter when the train is going over that beautiful curving brick bridge, that bridge)Isla happy to be eating a snack from a bakery with the same name as her favourite cousin.Isla letting Autumn try some Ring Pop. Auttie absolutely loved it.Isla’s distended tummy.OK, I just think this photo is hilarious, they were just sleeping this way, Isla’s hand went there after Autumn’s head went back, so no, she didn’t clock her.This was a place called Queen’s view and is probably the best family photo we got during the trip.  Three cheers for tripods and remote triggers.I made sure to capture those few happy moments Isla had on our trip.Isla asleep at the hospital, I took the photo because I couldn’t recall when she last let me hold her hand.Fuck, that word ‘Leukemia’ was a hard one to read.Isla in the PICU, she was incredibly sick and looks it here.We made sure Autumn got her time with her big sister.These 2 just getting used to how they would sleep for over 6 months.This sign on the door is tough.  To think people need to protect themselves from your child is hard.I can hear her sweet little voice when I look at this photo as she was about to ask what was no doubt a silly question.Just seeing her smiling was wonderful, we were counting together and we got to 110, and then for 111 she abruptly stopped and said “I don’t like that number” lolUgh, Isla’s belly.  Just so full of fluids, and hooked up everywhere.Nurses doing what they could for Isla’s hair while sedated.Trying to play and watch a movie at the same time.Isla’s hair was getting matted, you can tell just how sweaty it was here.This photo hits me in the feels.  So much love amidst all the medical paraphernalia and the mask.   Isla’s first time out of her room.  Too weak to walk, she was in a wheelchair for a bit.The bone marrow biopsy left a huge bump that lasted for ages.The stuffy at the top is Tusk, one of those Happy Meal toys.  He was suspected lost once after a CT scan and we had pretty much the whole hospital trying to find him.  Eventually Isla found him in her blanket.  We had nurses go trace their steps, talk to other nurses, security, anyone that may be able to help, all because the people at the IWK care.Dressing change time.  Dressing changes were painful and difficult, and Isla had many.After a day surgery, Isla slept in the recovery room.In the playroom getting a feel for the place.Time for a haircut.  Isla’s hair was quite long but was going to go, so we had it done on our terms.You can see Isla’s hair at the back, all in one piece, it was so matted.Isla covered in a red rash and all sorts of marks and they weren’t sure exactly why at this point.Back in the PICU for the scariest night of our lives, barely breathing, gasping for air, unable to settle, with doctors just watching and waiting.She eventually came out of it and even smiled for a photo.I didn’t know this was possible beforehand, but it is possible in some instances to bring the x-ray machine to the patient.This was Isla’s skin looking great after healing up a bit.Super Mom.You can see sores on Isla’s inner thighs forming, the worst ones are covered up here.The 2 strongest people I know.Reading is important to us, and to Isla it is also important to her stuffies.Isla nervous to be looked at, she was constantly being examined.This was the worst sore she had, one which she will likely always have a scar from, this photo was taken a couple days after it was at its worst.You can see here how much it is raised off her skin.These 2 love each other so much.Physio time.Physio gave Isla a little desk which she would sit at and just work on sitting first before walking.Isla looked in this photo about how she was.I received a text one morning with this photo.  It was the first time Isla had been sitting up on her own.This is what living in the hospital is like, trying to live your life as normally as you possibly can while being constantly monitored. Isla sitting up out of a chair for the first time.This photo probably makes me more emotional than any other.  Robyn had a nurse take the photo one morning as Isla was walking for the first time in something like 6 weeks.  Isla is proudly looking at Robyn.  It was a big moment and I cry every time I look at this.We were on a day pass and stopped at a toy store on South St. These 2 look like an old couple out for coffee at a diner.The first time to the house, I love the excitement on Isla’s face.She was so excited to see home and Cinnamon, and Cinnamon nearly lost it she was so excited.Nurse Mommy flushing Isla’s tubies.Popsicles and a new bear from her preschool teacher.We may have been out on a day pass, but still needed to go back for day surgery, at least there was a popsicle and puppet.I can guarantee that next Christmas, Isla will see a gingerbread house and mention that I destroyed the one the previous year, because I sure did.  I just pushed too hard putting the roof on.  So we let her decorate the panels instead of the house.  I will be more gentle next year.With Isla home at the end of November and not knowing if it would be her last Christmas, I setup the tree so we could all decorate it together.Got to see the neighbour’s Christmas Light setup.Isla’s room had a pretty crappy view.  In this photo we are sitting way up high, higher than we should, on a ledge, and overlooking the roof of the atrium in the main entrance of the hospital.  The many gifts from friends kept Isla entertained and they were very much appreciated.During dressing changes everything was done to keep Isla entertained, including games on an ipad.  It worked better than nothing, but was still painful for her.Isla doing ‘preschool’, note the awesome Bus in the background.  Pretty sure this walk ended with Autumn hitting her feet on Isla’s and them both going down and Autumn slamming her face into the ground.  She was OK.All of Isla’s finger and toe nails did this.  Lovely.Isla loving her physio appointment.  She was at one point asked to be in a video for educational purposes and did very well.Autumn pressing the buttons on the bottom of the bed.As the dietician said “calories are calories”.  Kids are encouraged to eat anything to get calories.One of the best things about 6 Link is this view out the window of the family room.  I loved just sitting there with the girls and looking out, playing I spy.I feel like I saw this a lot, Isla running to the playroom with Autumn chasing her.A bit of a rash forming.Isla always wanted to know what was going on.Playing with Buddington was a favourite of Isla’s.Isla kindly sharing a doll with Autumn.Isla leaving on a morning adventure with Robyn after weeks on isolation.Christmas eve at the IWKChristmas morning, the girls had a treasure trove of presents to go through.Isla’s leg was a bit swollen, step 1 an ultrasoundStep 2, an X-ray.Step 3, a CT scan.After Isla’s operation.  They told us it would not be a cast, then she came out of surgery with this cast.  I had to go buy larger pants so she could fit them over the cast.This was to drain the fluid from her leg after surgery.The bandage beneath everythingThe scar where they operated on her leg.  Another X-ray, for this one they used a cool seat designed for kids to sit upright in.Isla loved paying hide and seek in her little room where there are pretty much no hiding places.  Inside the wardrobe was the best spot though.I didn’t take many photos of Isla upset, even though it happened quite a bit.  She just faced so much.Getting an Echo and EKG done.Isla’s leg scar after healing up a bit.  I like to tell her that scars are just stories, and she’s going to have a good one.She was so proud of this pie we made.With sensitive eyes.  The curtains were closed and lights off and she still needed sunglasses and could barely open her eyes.Meeting the Mooseheads without seeing themWith Duckie and Soft Duckie keeping her company.Bathing her was a challenge as we needed to keep her lines as dry as possible.Going home for a couple days.Checking her height.  It is really hard to get a kid to stand up straight.Oh eye drops how we hate you.  Those things are torture.Valentine’S Day, I got the girls each a bracelet that says “Be Brave”.So excited to wear a dress, and so beautifulA rare abrasion from her NG tube bandage.Dressed in her Halloween costume for her Princess Tea Party, and so damn happy.Isla running out the door to help get more cups for the party like a good little host.Isla with Bella, the other little girl with AML, and the only other long term 6 Link tenant while we were there.Note her feet, they are off the floor.  She is flying.I asked Isla to stand in while I tested my light.  What a good little photo assistant to make that fun.Our first in hospital family photo, taken on St. Patrick’s DayThe girls enjoyed their Easter Egg hunt.Isla and Kaia on Kaia’s last day of treatment.I love that Isla was able to make friends through this.  Leukemia and Lymphoma right here.Finally getting a chance to get outside and enjoy the playgarden.Running the halls in her housecoat.Last IV chemo running.
Big scary moment coming up.Isla’s last chemo.  Robyn has her up top, one nurse gives the needle, another helps hold her legs, and my hand holding her feet while I took the photo.  I feel like this photo demonstrates what is really involved in healing our children, and it’s not easy.We had a pizza party with the nurses after her last chemo to celebrate.  It would be many weeks before actually getting to go home though.Isla holding her counts and one of Brayden’s balloons from his bell ringing on May 9th 2018.  They needed to get to 500 for her to go home.Isla didn’t want to ring the bell at this time.  We told her she didn’t have to and could ring it any time she wanted to on a future visit.She instead wiped her name off the board.  Her bell ringing moment didn’t involve the bell itself.Isla with her friend Jasmine, playing for one last time in the Playroom.The nurses have a whole bunch of sayings and Isla loved “Bye Bye Butterfly” so we thought this was a good fit as a gift for the nurses.Last thing Isla did on 6 Link before leaving was to give Buddington a High 5.So damn excited to be going home.  I parked on the roof just because she loves when we park on the roof.In the evening of her last day, we attended a Peppa Pig show, she loved it.Still stuff to do at home after release.

 

Isla, Strong and Cancer Free.  I am so proud of her.

The ‘Too Long Didn’t Read’ version:

 

After being diagnosed with an ear infection and us thinking she was sick due to that, we eventually took Isla to the hospital October 27th where she was diagnosed with Acute Myeloid Leukemia (AML) Inversion 16.  She underwent 5 rounds of chemo spanning 6.5 months at the IWK in Halifax, where she remained an inpatient over the course of her treatment.  Isla had 4 surgeries, 4 different central lines put in and taken out, 2 GFR tests, an MRI, 4 CT scans, about 10 X-Rays, and 10 ultrasounds, about 50 blood and platelet transfusions, 2 bone marrow biopsies, 4 lumbar punctures, a lavage, eye drops over 100 times, social anxiety, re-learning how to walk, many reactions to drugs and blood products, Staphylococcal Scalded Skin Syndrome, renal failure, 30 dressing changes, a cast, a fungal infection called candida, coronavirus, c.diff twice, about a quarter of her time in hospital spent on isolation, and a roller coaster of emotions and feeling well and unwell.

 

We shaved Isla’s head in round 1 when it started falling out and became difficult to deal with.  Unlike most kids her age, she was self conscious about it, but eventually got over it.  Isla was very aware of everything going on around her and doctors had to be careful what they said when in the room.  She learned a lot about her treatment and can now play a mean imaginary doctor.  We are proud of how well she faced all this adversity and came out on top.  As she gets older I am most definitely going to be referring back to this time in her life if she ever tells me she can’t do something.

 

Robyn was the constant in Isla’s life, spending the entire 6.5 months in hospital, while I was Autumn’s constant at home.  I would have loved to be there to let Robyn sleep in her own bed at home, but can you blame a 3 year old for wanting her mommy?  It pained me to see Isla calling out for Robyn when she even left the room to go get water, but it hurt far more when Isla was going through something difficult, like a dressing change, and would yell “I just want to go home”.  As a parent, I felt so useless at times, just hoping new complications wouldn’t get out of hand, and waiting on results.  I’m not used to feeling helpless and I don’t like having to sit on the sidelines, but I believe 100% that the IWK has excellent doctors and nurses who know their stuff and will do their very best.  We are so lucky to have modern medicine on our side.  The treatment for cancers have come a long way.

 

Isla is currently cancer free, a couple of words I find difficult to say, like I might jinx it.  We are very fortunate that the kids Isla knew best in the hospital have had good outcomes, but there are definitely others we have known who have not have had such good outcomes, or others whose outcomes are currently in limbo, and it’s for those people and their families that I know I need to celebrate this victory.  Life is short and imperfect and none of us knows when it may end, so take your victory laps, enjoy them, do those things you have been putting off, hold on to the good moments and never let them go.

 

*Copied from the long version* It’s with that in mind that we want to try to give something back and help other parents going through a similar difficult time.  Details will be up soon, but essentially we have created some shirts to celebrate children beating cancer.  It started with an idea to have a shirt for Isla to wear to ring the bell in, but with her counts coming up so quickly at the end, I simply ran out of time to get it ready in time.  I took to asking others what they thought of the design and people loved it.  My friend Ashley, whose son Jude is mid treatment for cancer informed me of the gold ribbon, and I think that was the added touch the design needed and pushed this whole idea forward.  The gold ribbon is representative of all childhood cancers and we have come up with a shirt that says Strong and Cancer free with the Gold ribbon representing the cancer part of that equation and Strong and Free representing the Canadian part of this.  Isla is Strong and Cancer Free and I want her to wear her shirt proud, with the gold ribbon like a gold medal for winning this fight, and I would love to see other little ones and their families wearing that gold medal too.  We will be selling these shirts HERE with the plan of using the profits to help families on 6 Link at the IWK.  We have been there and we know that it’s not home and things such as having good meals is difficult and a little outside help would be appreciated.  I don’t think we could ever give back enough to ever feel like we have given back enough.  We truly appreciate everyone who was there for us, and we have met and become friends with other families facing cancer and know they appreciate it too.

Renee Nadeau - What a story! They say God only deals us what he knows we can handle so I have to say “Congrats” to two awesome parents. What a beautiful family. You guys did it!!! Thanks to you, Isla is a survivor! I cannot imagine how tough it was to be so stronge. I am always here if you ever need anything. XO :)

Francis Asis - Amazing! Amazing! Amazing!
Thank you so much for sharing Isla story.
I’m also a cancer survivor that had AML in 2016. I’m extremely happy Isla got through it. She’s a tough young girl and her smile is so contagious and beautiful.
Never lose hope – God is great!

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