When Kiera was about two years old, I started brushing off the dark thoughts.
Of course she had bruises all over her legs. She was an active toddler who fell down all the time. I told myself it was no big deal that she frequently woke up vomiting in the morning. If she didn’t eat her supper, I just had to give her a bedtime snack, and the vomiting could be avoided. She would grow out of that strange little quirk.
I noticed that she would become sweaty during her naps or earlier in the night, but I figured she was more warm-blooded, like her dad. Byron kept pointing out that she looked pale and that her lips seemed to have lost their colour. I reminded him that we had just come through an entire Canadian winter with hardly any sunlight. Of course she was pale.
But then, when Kiera was two and a half, on my last day of work before beginning maternity leave (I was pregnant with my second baby Eliya), I gave Kiera a bath and noticed tiny red specks scattered across her torso and upper thighs. Kiera had suffered from eczema as a baby, but this was different. There was no texture, no scratching, just colour beneath the surface of her skin.
I decided not to panic about that either. I would wait and see if it disappeared as mysteriously as it had appeared.
Unfortunately, it didn’t disappear.
It got worse.
Byron told me not to Google it, which, of course, eventually tempted me enough to do exactly that.
Petechiae? It definitely sounded like petechiae.
And do you know what frightening word appeared alongside it?
Leukemia.
That haunting thought, the one that had lingered in the back of my mind ever since Kiera’s easy and obvious bruising, came rushing back.
After about three weeks of the spots continuing to appear all over Kiera’s body, we decided to make an appointment with our family doctor.
To our relief, the doctor didn’t seem concerned and prescribed a steroid cream. In a way, that felt like a blessing in disguise. For the final two or three weeks of my pregnancy, I felt much less stressed.
But we began noticing other things. Kiera was becoming increasingly clumsy, and her bruises were taking a very long time to heal. Once, Byron tried to stop her from hitting her face against the headboard, but he accidentally caught her cheek with his thumb. A dark, almost black bruise appeared, and stayed there for weeks.
After Eliya was born, things went downhill quickly.
I thought maybe Kiera was having trouble adjusting to her new sibling. Perhaps she was feeling a little depressed. She would simply lie around quietly, no longer her energetic, happy self.
Then, one night, she looked at me and said, “Mommy, something is wrong.”
A strange, eerie feeling moved through me.
“What do you mean, sweetie?”
She just repeated herself.
“Something is wrong.”
Again and again, she said it.
Then she lost her appetite and stopped eating.
As expected, she began vomiting, as she always did when she went without food. Except this time, the vomiting lasted much longer than usual. Finally, after an entire day of not eating and vomiting, it subsided.
But instead of perking up, as people usually do once an upset stomach settles, Kiera just kept sleeping. And sleeping.
When she woke up, she nearly fell off the couch. She seemed completely out of it. Byron and I looked at each other, and we both knew we had to do what we had been dreading.
Byron took Kiera to the emergency department, but I made the difficult decision to stay home with my eight-day old newborn.
I watched him carry Kiera out the door. By then, she was awake enough to be upset. She called, “Mommy!” and reached her little hand toward me.
I held back my emotions and reassured her, “Everything is going to be okay sweetie. I’ll see you soon.”
As soon as the door closed, I turned around and keeled over, sobbing.
The next few hours were torturous.
I waited by my phone, pacing around the house with my tiny newborn, Eliya, in my arms. I felt a small sense of relief knowing that they had taken Kiera in right away and that she was still conscious. I had been afraid she might pass out during the drive to the hospital.
Finally, Byron called.
“So, what’s going on? What did they say?”
Silence.
“Hun?”
More silence.
“They’re saying she probably has leukemia,” he finally said. “She has to be flown to CHEO” (Children’s Hospital of Eastern Ontario).
The fear I had tried so hard to dismiss had become real.
I remember feeling completely helpless and devastated. And as I listened to Byron on the phone, I felt terrible that he was the one having to face this without me.
Only one parent could accompany Kiera on the flight to CHEO. I was still breastfeeding and caring for our eight day old baby, as well as trying to care for myself. I called my dad at one in the morning and told him what was happening. He came and stayed with me.
Byron’s mom was with him at the hospital and stayed with Kiera.
After hours of waiting, they were finally able to get Kiera onto the plane with Byron. I gathered some things, and my dad agreed to drive Eliya, Byron’s mom, and me to Ottawa, a journey of about four hours.
Throughout the drive, one thought repeated itself over and over in my mind:
What did we do wrong? How could this happen?
Finally, we made it to CHEO, and I got to see Kiera after almost 24 hours apart.
It took everything in me to act cheerful for her when seeing her was absolutely heartbreaking. She lay limp and pale in a hospital bed, with cords and tubes extending in every direction. She didn’t say much.
I sang her a song, and she fell asleep, something none of us had managed to do properly in almost 48 hours. It frightened me to see her sleeping so much. Kiera had always been a baby and toddler who seemed to resist sleep and getting her to settle had been one of our greatest struggles.
Byron was completely exhausted and drained, so I asked a nurse to come and explain what was happening. She began talking about hemoglobin, platelets, neutrophils, white blood cells, and red blood cells.
I was completely lost and confused.
Hemoglobin is the protein inside red blood cells that carries oxygen from the lungs to the rest of the body. Platelets help the blood clot and stop bleeding. And neutrophils help fight bacterial and fungal infections.
Kiera needed blood and platelet transfusions. She had basically no platelets or neutrophils left in her body and her hemoglobin was 62 (which is dangerously low). The hospital in North Bay had struggled to get an IV into her, leaving her with bruises and bleeding all over her body.
We spent several nights in the hospital. Every time someone came into our room, it seemed we had another set of forms to sign.
They had us signing forms for leukemia research before we had even received the results of Kiera’s bone marrow biopsy. They wanted to insert a PICC line, but at the last minute, we refused.
When the biopsy results finally came back, we were told there was no cancer. Kiera did not have leukemia. This felt like great news!
But they hadn’t been able to obtain a good enough sample, so the procedure had to be repeated.
A week later, Kiera had to be put under general anesthesia for a second bone marrow biopsy.
The results were the same: no leukemia. Her bone marrow cellularity was lower than average, but not low enough to meet the criteria for severe aplastic anemia.
They didn’t know what was wrong.
They said she was a mystery.
We spent two weeks in Ottawa, staying close to the hospital. Kiera’s blood levels continued to drop despite the transfusions, and we had to keep returning to the hospital for more blood and platelet transfusions.
Every visit involved nurses struggling to insert an IV into her tiny veins. She screamed and cried, and each appointment seemed harder than the one before. I wished I could take her place.
At only two and a half years old, how do you explain what is happening to them?
I held on to the hope that she was young enough not to remember any of this, that not understanding her situation might somehow be a blessing in disguise.
But as the hospital visits, bone marrow biopsies, and transfusions continued, Kiera’s condition kept getting worse. She began bleeding from her gums. She couldn’t eat any solid food. Within a few weeks, she lost five pounds, going from 27 pounds to 22. One night Kiera woke up from her sleep screaming “NO POKE-Y, NO POKE-Y!”.
Nothing seemed to bring her joy anymore.
We tried to make the time between her weekly transfusion appointments as happy as possible. But even trips to the playground or the beach couldn’t cheer her up anymore.
CHEO continued monitoring her blood levels every week for the next couple of months. They were waiting for specialized test results to come back so they could rule out genetic abnormalities.
Every week, we made the four hour drive from North Bay to Ottawa, four hours each way.
We asked if anything could help Kiera’s gums, since she was essentially living on smoothies. They prescribed a medication called tranexamic acid to help reduce the bleeding.
We used it for a couple of weeks. At first, it seemed to help. But then things got worse.
Kiera’s gums began to swell so much that we could barely see her teeth anymore. It took us a while to understand what was happening, but tranexamic acid slows the body’s process of breaking down blood clots. Because Kiera had so few platelets, the bleeding was building up inside her gums, and the medication was making the situation worse.
Then Kiera had a small accident. She fell in the living room and hit her forehead on the bottom of the couch. We could already tell she was showing signs that her platelet levels were low, so Byron decided to take her to Ottawa a day early to keep her close to the hospital.
When they came home two days later, I experienced the biggest shock of my life.
Kiera’s eyes were surrounded by deep black-and-purple bruising, and her face was so swollen that I didn’t even recognize her.
All of that from one bump to the forehead.
I asked Byron, “What did they say about this? Is this okay?!”
The doctors explained that it looked much worse because Kiera’s body didn’t have enough platelets to stop the bleeding and heal quickly.
It took a couple of months for most of the bruising to disappear. Kiera continued to have dark circles beneath her eyes for almost a year.
We went to another children’s hospital in Toronto, Ontario, to get a second opinion: SickKids Hospital.
We were told that Kiera probably had severe aplastic anemia and that she should have a third bone marrow biopsy to confirm it.
Great.
That was the last thing we wanted, but we felt we had no choice. We needed answers.
At that point, we returned to CHEO and agreed to the third bone marrow biopsy. Since Kiera would have to be put under anesthesia again, we also agreed to have a PICC line placed. We hoped it would spare her the torturous IV insertions she had been enduring every week for the past two months.
A PICC is a peripherally inserted central catheter: a long, thin tube inserted into a vein in the upper arm and guided through the blood vessels until it reaches a large vein near the heart.
All of the specialized blood tests eventually came back. They showed that Kiera had no genetic condition causing her blood problems.
Before Kiera’s bone marrow biopsy, we discussed what our options would be if she were diagnosed with severe aplastic anemia. We could either pursue immunotherapy or proceed with a bone marrow transplant.
Somehow, in the middle of everything happening with Kiera in the hospital, and while caring for a newborn, I managed to research both options. Byron and I were leaning toward a bone marrow transplant. It was the more intense option, and the risks were higher, but if the transplant was successful, Kiera would no longer have to worry about the aplastic anemia returning.
Immunotherapy was a treatment, but it wasn’t a cure. The procedure was much quicker and carried fewer immediate risks, but the long-term outcomes were not as promising. The statistic that has stayed with me most is that, after five years, studies showed that among people who improved following immunotherapy, 50 percent either developed leukemia or experienced a return of their aplastic anemia.
So, about two months after we first took Kiera to the emergency department in North Bay, she underwent her third bone marrow biopsy. The results confirmed that Kiera only had 11% bone marrow cellularity remaining. She did, indeed, have severe aplastic anemia.
Most people have never heard of severe aplastic anemia. It is very rare. They say about 0.5 new cases per million people. It is a life-threatening bone marrow failure disorder where the marrow does not make enough red blood cells, while blood cells and platelets.
Leukemia is much more common. Cancer of the bone marrow is about 150 cases per million people. Leukemia is also the most common cancer in children, while severe aplastic anemia is rarely seen in children and is more common among young adults.
I suppose that is why we were repeatedly told that Kiera probably had leukemia early on.
The doctors at CHEO told us that Kiera needed to begin immunotherapy immediately, literally, we were instructed to go up to the fifth floor and start the process right away.
But what about our other option?
We asked about the bone marrow transplant. They explained that waiting for a transplant was too risky. A transplant would take much longer to arrange, and Kiera had already been neutropenic for months. She also didn’t have a confirmed 100 percent sibling match who could donate bone marrow.
We felt as though we had no choice. After telling the doctors that we needed one day to process everything, we said we would return to the hospital the next day to begin hATG treatment.
We received pamphlets about severe aplastic anemia, along with information about support groups for children and parents who were living with, or had already experienced, the illness. Strangely, I didn’t want to join them. I didn’t want this illness to envelop my family or become part of our identity. Somehow, it felt defeating to me. I was also afraid that hearing about other families’ experiences, especially the negative ones, would influence me too deeply.
So, the immunotherapy treatment involved receiving purified antibodies derived from horse serum through an IV infusion. Each infusion took approximately four hours and was administered over four days. Kiera was also given steroids, cyclosporine (an immunosuppressant medication) and an antifungal medication.
Before each hATG infusion began, she received a significant dose of Benadryl and Tylenol because allergic reactions and fevers were very common side effects. It was very frightening to be giving Kiera all of these intense medications at once. We always tried to avoid giving her pharmaceuticals her whole life, and then there we were bombarding her little body all at once.
Not only did we have to keep track of all her medications, but we also had to care for Kiera’s PICC line every day. That meant flushing the line and injecting a heparin solution to keep it clear. Managing to do all these things to a toddler multiple times a day was no small task. I longed for the days where I only had to worry about the fight to get her dressed before going out.
Once again, Kiera had some very unusual reactions to the treatment. Most people developed high blood pressure and fevers, but Kiera experienced the opposite. Her blood pressure would drop, and she would break out in intense cold sweats while her body temperature fell dangerously low.
Somehow, we made it through all four nights of treatment. There was only one significant meltdown: a screaming episode in the middle of the night because we needed to change her shirt, which was completely soaked with sweat.
We had been told that her blood levels should begin to improve in about three months. Until then, fevers would be common, and she would still need many transfusions. The doctors warned us that things often got worse before they got better. We could only hold on to the hope that this difficult treatment would eventually help her heal.
The doctors agreed to give Kiera platelet transfusions whenever her platelet count dropped to 30. This would give her mouth and gums a chance to heal and recover. As a result, she was receiving platelet transfusions every three to four days and blood transfusions about every two weeks.
Because of all the appointments, we needed to remain close to the hospital. We were fortunate enough to get a room at Ronald McDonald House, a nonprofit organization that provides low-cost accommodations for families whose seriously ill children are receiving treatment at a nearby hospital. Byron also had a kind family member who lived about an hour from the hospital who was always welcoming for us to stay when we needed.
At our first appointment a few days after treatment, the doctors mentioned that they wanted to remove Kiera’s PICC line because having it in place increased her risk of infection, especially while she was neutropenic.
We were not willing to do that yet.
Kiera still needed platelet transfusions every three to four days, and we had only just gone through the process of having the PICC line inserted because it was supposed to make those transfusions easier. Unfortunately, the dressing also had to be changed every week, and Kiera hated that just as much as she hated getting an IV.
So we made an agreement with the doctors: once Kiera could go a full week between platelet transfusions, we would agree to have the PICC line removed.
About a week after treatment, Kiera developed her first fever. Because she was neutropenic, it automatically meant a two-night hospital admission so she could receive antibiotics. Thankfully, we were able to leave after two nights and return to Ronald McDonald House, where we stayed for another week.
CHEO agreed to arrange transfusions at the hospital in North Bay so that we could try going home and have Kiera receive her platelet transfusions there between appointments at CHEO.
Unfortunately, we were only home for about a week before Kiera started to feel feverish again. We had to drive back to the CHEO emergency department, where she was admitted for almost two weeks. She had pneumonia and a bacterial infection in her bloodstream.
That was an especially frightening time for me. I spent every night at the hospital beside Kiera, afraid to fall asleep. Whenever I woke up, I would panic and immediately check to make sure she was breathing.
Eliya stayed at the hospital with us through the nights as well. I had set up a bassinet in the room and exclusively breastfed her. Thankfully, she slept fairly well for a newborn, usually waking only once during the night to feed.
I woke much more often to care for Kiera. The IV fluids made her need to urinate several times a night, and although she was only just over two and a half, she was already fully potty-trained at night. Because she was always connected to her IV, I had to carefully help her to the potty, measure her urine, and record the amount on the whiteboard.
I also woke whenever the nurses came in to take her vitals. Kiera usually woke frightened and panicked whenever they took her blood pressure, drew blood, or flushed her IV line, so I did my best to comfort her and keep her calm.
After that hospitalization, we didn’t go home for almost two months. Instead, we stayed at Ronald McDonald House. We were afraid to return home because the hospital in North Bay didn’t have the same level of expertise or the specialized resources needed to care for Kiera if another serious situation arose.
The immune-suppressant medication cyclosporine, which Kiera had to take twice a day, was known to cause rapid hair growth. As a result, Kiera’s appearance began to change significantly. Her once very fair, dainty eyebrows became thick and dark. Her back was covered in dark hair, as were her arms and legs. It was very unusual. Sometimes I would stop and think, “Wow, she doesn’t even look like my child anymore.” Considering everything she was going through—both mentally and physically—that statement was probably close to the truth.
Then, two months after treatment, Kiera’s neutrophil count began to rise slightly. It was enough for us to stop giving her antifungal medication twice a day. That felt like such a victory.
Her gums and mouth were finally beginning to look normal again.
About two and a half months after treatment, Kiera began going at least a week between platelet transfusions. We decided that it was time to remove her PICC line.
I felt very torn. On one hand, I was relieved that we would no longer have to worry about flushing the line every day. I could finally give Kiera a bath without panicking about getting her arm wet, and she hated bath time because of the PICC line, too.
On the other hand, I was terrified of returning to regular IVs and the struggle of finding a vein in her tiny arms. We would also need to receive her transfusions at the North Bay hospital, where the staff did not have nearly as much experience inserting IVs in small children.
Our first IV transfusion appointment in North Bay was traumatic. Three different people tried and failed to insert the IV before they finally called an anesthesiologist to help. Kiera screamed through the attempts. As they continued trying to find a vein, petechiae began appearing across her arms right before our eyes.
It was heartbreaking to watch her go through that.
Afterward, the staff agreed that they would call the anesthesiologist from the beginning for future IVs. Most of the time, the anesthesiologist was able to get the IV in with one attempt, although occasionally it took two.
For the rest of the winter, we continued travelling to North Bay Hospital every week for transfusions and to CHEO once a month for follow-up appointments and additional transfusions. Around this time, Kiera’s eczema returned. She developed dyshidrotic eczema on her hands and feet. The doctors were astonished because she was taking high doses of cyclosporine twice a day, a medication that could also be used to treat eczema.
Six months passed, and Kiera still wasn’t holding on to her platelets or red blood cells. Serious discussions about a bone marrow transplant began.
The medical team searched their donor registry to see whether Kiera had a suitable match. We also had our second virtual consultation with SickKids in Toronto to discuss the transplant process.
They wanted to determine whether Eliya could be a match for Kiera. At the time, Eliya was only nine months old. We were told that the ideal donor is usually between three and four years old and weighs approximately 30 pounds. However, the doctors explained that there was a way to collect bone marrow from Eliya despite her young age.
The procedure would have been extremely uncomfortable for her, and there was a possibility of serious side effects, including seizures. But because Kiera would have the best chance of success with a fully matched sibling donor, using Eliya’s marrow could have allowed Kiera to avoid the chemotherapy portion of the transplant process.
We ultimately decided that we couldn’t put another child through that kind of suffering, especially a baby who was too young to understand what was happening. We never had Eliya tested.
The donor search came back with no matches. That meant Kiera’s best option was to receive a half-match transplant from Byron. We were told that we would need to spend at least six months away from home, including at least one full month in the hospital.
By the grace of God, something changed in March, eight months after Kiera’s treatment. Her red blood cell reticulocyte count began to rise, and for the first time, she went three weeks between blood transfusions instead of the usual two.
That small improvement gave everyone hope.
CHEO agreed to put the bone marrow transplant on hold while we waited to see what would happen. Because Kiera’s neutrophil levels had returned to normal, the doctors felt it was safe to wait.
Over the next few months, we tried to gradually extend the time between transfusions. The hope was that, by allowing more time to pass, we could encourage Kiera’s body to begin producing more of its own red blood cells and platelets.
We were also considering whether the 22 blood transfusions she had received over eight months had caused dangerously high iron levels in her blood. The excess iron could have been placing additional stress on her body and making it harder for her bone marrow to recover.
The doctors prescribed an iron-chelation medication to help remove the excess iron. I really didn’t like the idea of giving Kiera another medication. Then I read the information pamphlet and discovered that patients taking it were supposed to have a platelet count of at least 50. At that point, Kiera could barely maintain a count of 10.
Ultimately, we decided not to give it to her. The risks felt too high.
I can’t fully explain the anxiety of trying to take a three-year-old on adventures and let her enjoy life when her platelet count was so low that even a minor accident could become life threatening.
Most parents worry about their young child getting hurt. But this was a completely different level of fear. Every bump, fall, or bruise carried the possibility of something much more serious.
Thankfully, there were no major incidents during that time. The worst one I can remember happened when Kiera somehow pinched her arm in a folding closet door. She developed a fairly large hematoma that remained for quite a while.
Every night, before Kiera fell asleep, I would whisper in her ear, “You are healthy and strong.”
I tried my best never to make her feel as though something was seriously wrong. I wanted her to feel safe, happy, and free to be a child, even while I carried so much fear inside me.
The power of the mind is truly incredible.
By May, nine months after receiving hATG treatment, Kiera had her very last platelet transfusion.
She spent the summer with very low blood counts, but at every appointment, we saw tiny improvements. Her numbers were slowly rising, and she no longer needed transfusions.
During that time, Kiera developed her first ear infection, which was frightening given her condition. Thankfully, she pulled through without needing medication or an emergency visit. Her hemoglobin level was 67, which was extremely low. For a child her age, normal levels are approximately 100 for hemoglobin and 150 for platelets.
By the end of the summer, Kiera’s hemoglobin had risen to 76, and her platelet count had reached 30. These numbers were still far below normal, but they represented meaningful progress.
For a couple of months, Kiera developed larger bumps on her skin. They would gradually grow, reach a peak, and then ooze blood and yellowish discharge. The doctors thought it might be molluscum contagiosum, but that condition was supposed to be contagious. Since none of us developed it, and the bumps disappeared after only two or three months, we were never certain what had caused them.
Kiera continued taking immunosuppressant medication for another year, and we travelled to Ottawa every one to two months to have her blood levels checked. She experienced a couple of fevers during the fall and winter, and each one brought a great deal of stress. One fever caused an angry redness to spread across her skin, along with hives.
Although her neutrophil levels were normal, her platelet and hemoglobin levels remained low. Any illness seemed to halt progress in her blood levels because her body had to focus on fighting the immediate threat. In May of the following year, we were finally given permission to begin slowly tapering her off the medication.
As soon as we began weaning her off the medication, her eczema returned with a vengeance. This time, it was worst around her ears. She also experienced frequent earaches that summer.
By October, she was completely off immunosuppressants. This was two years and two months after her immunotherapy treatment. Her hemoglobin level was 97, and her platelet count was 70.
We now travel to CHEO every six months for follow-up appointments. At her most recent appointment, her blood counts were still improving.
We hope that one day Kiera’s blood levels will return completely to normal. I also believe her eczema will resolve as her body gradually returns to normal iron levels. Her iron levels are still well above average because of the numerous blood transfusions she received. Hopefully, we will also be able to avoid antibiotics when possible, allowing her gut to continue healing and her skin to improve.
Three years later, Kiera does seem to have faint memories of her illness and of spending so much time in hospitals. That experience completely changed Byron’s life and mine.
I feel incredibly blessed to be past that time. We went from watching our toddler fight for her life and endure pain and suffering that most adults could hardly handle, to watching her grow into a beautiful five-year-old who is living a completely normal life.
I eventually quit my full-time job because I realized that my time with my children is the most important thing. I still have difficult days as a parent, just like everyone else. But I try to stop and remind myself that life is short, and that things could be so much worse. We know that better than most.
I was always somewhat health conscious, and that naturally carried over into how I cared for Kiera as a baby and toddler. After everything we went through, I became even more interested in holistic health.
We may never know what caused Kiera’s bone marrow failure. That uncertainty still haunts me. Kiera was always cared for by family as a baby and toddler, so I often find myself wondering what could have disrupted her body so severely and caused her bone marrow to stop working. I searched for some obvious poison, toxin, or explanation, but there was never anything clear.
At times, I even found myself wondering whether something as ordinary as watching too much television could have somehow affected her. When you don’t have answers, your mind can go to places you never expected.
I like to believe that the care we gave Kiera throughout her life helped contribute to her positive outcome, but I’ll never truly know that either. All I can do is continue learning as much as I can about living a healthy life and pray that things remain smooth sailing from here on.
Now that we are past the worst of it, and I have experienced that level of terror, I honestly feel as though I can move through life with more bravery. I work especially hard not to pass unnecessary fears or anxieties on to my children.
We only get one life. We need to appreciate every moment and every person in it, because things can change in an instant, and sometimes, there is absolutely nothing we can do to control it.