Meet Sadie

Sadie was born on March 23, 2019 . Sadie was the happiest and easiest baby in the world and we were very lucky. We called her our "trick baby" as she was so easy that we immediately wanted to have more. On October 16, 2020 Sadie came down with a high fever of 39 degrees. Given the Covid rules at that time, it took us quite a while to find a doctor who would see her given her symptoms. After multiple days with a fever over 39 and multiple calls with health link, we found a walk in doctor who would see her. We were advised Sadie had strep throat and were started on antibiotics. After a few days on the antibiotics and the fever still hadn't come down. We went to the Children's Hospital and explained the situation. They checked her throat and said the strep seemed to be clearing up so were sent home to continue with the antibiotics. A few days later and her fever hit 40 degrees. We went back to the Children's Hospital where they did multiple tests which included blood work. The result of her blood work showed she had 0 neutrafill blood cells which should normally be between 2000 and 7500. She was immediately admitted to the hospital as she was high risk given neutrafills are what help your body fight off infection. 

After being admitted, Sadie had to have multiple blood transfusions and bone marrow biopsies along with other further testing. On October 27, 2020 she was diagnosed with Acute Lymphoblastic Leukemia (ALL). Sadie was 19 months old at this time, and I was 12 weeks pregnant. We spent approximately 2 weeks in the hospital and Sadie began her chemotherapy right away. She underwent day surgery to have a PICC put into her arm which was followed by another day surgery 8 weeks later to have an IVAD put into her chest (for administering chemotherapy drugs).

The first phase of Sadie's treatment was induction. This involved heavy doses of chemotherapy, a very compromised immune system, hair loss, heavy doses of steriods, loss of muscle mass which resulted in her not being able to walk, insomnia, mood swings and visits to the hospital at least once a week. 

In December 2020 Sadie began the consolidation phase of her treatment. Although still very intense, she was able to regain muscle and began walking again a few days before Christmas. During this phase Sadie received a different type of chemotherapy which involved us spending 2 nights in the hospital every 3 weeks. This continued until April 2021. Sadie also had to be sedated multiple times during this phase so they could administer chemotherapy into her spine, should the cancer have spread to her brain. 

In April 2021, we did our last 48 hour stay in the hospital and shortly thereafter, on April 30, 2021, Sadie's little brother, Orion was born. Sadie entered the last phase of her treatment at this time which is called Maintenance. She now only attends at the hospital once per month for chemo or bloodwork however, still receives multiple oral medications and chemotherapy drugs at home daily. This phase will continue until April 2023 at which time she will be done her treatment (2.5 years total). We are very hopeful she will only need to have one round of treatment and the leukemia will not come back. 

Since Sadie has started her maintenance phase, she has been able to live a much more normal life. She has recently started a dance class and will soon be attending at a daycare 2 days a week. She is doing so well thanks to the amazing care she is receiving from the Oncology team at ACH. 

Meet Mikey

Mikey’s Journey With Retinoblastoma

Mikey’s story is a bit of a long one, and likely a bit unusual to most. Mikey is 3 years old and was diagnosed with Retinoblastoma when he was 2 and a half. That is not really where his story starts though, it starts when he was born. You see, Mikey is adopted. His story starts with the things he survived even before cancer. So, lets start at the beginning….

Mikey was born in 2017 to parent who did some pretty horrible things to him. He faced many kinds of neglect and abuse such a being locked alone in a dark basement alone for days, starved, left outside alone overnight, physically hurt, among other things. At 9 months old Mikey was finally taken into foster care. He stayed with his same foster family until he came home to us.

We were matched for adoption with Mikey in late March 2020. After all the info share meetings and everything else was done and ready, we finally got to meet our little boy on May 20, 2020. Even though we had never seen him, we were already in love. When we went to the foster family’s home to begin Mikey’s transition to our home (a 4-day process) we noticed several things about his left eye within minutes of meeting. The iris was a different colour to his right eye, the right was a light, clear blue and the left darker and foggier. The white of his left eye was dark, shadowy, and very veiny, and his left pupil had a very noticeable white cat eye like sheen over it anytime the smallest bit of light hit it. He also had a bit of strabismus. When we asked the foster parents about his eye, they informed us that the iris had changed colour overnight over 3 months prior to us meeting Mikey but that they had not ever noticed the rest. They neglected to take him to the doctor to have the eye looked at if they had his cancer may have been diagnosed much sooner and his eye saved. We completed transition and brought Mikey home on the evening of May 24^th. The morning of May 25^th we took Mikey to walk in to have his eye looked at and to ask for a referral to an Ophthalmologist, we already had an ophthalmologist we knew and trusted from working with our daughter, so we asked for a referral to him (Dr. Chacon). Sadly, referrals take time, and it was July 7^th by the time we saw Dr. Chacon. He confirmed what we had suspected, Mikey had gone blind in his left eye. He could not get a clear look at what was happening as things were so cloudy in the eye, but he was concerned enough to call ACH then and there to have us transferred to their care.

July 15^th, we had our appt at ACH where we met Dr. Astle. He again confirmed Mikey had no vision left in his left eye. He also told us that Mikey’s retina was completely detached, he had severe glaucoma, and large masses in his eye. He requested we come back the following morning for a sedated CT scan and MRI so he could confirm if it was Coats Disease or Retinoblastoma. He told us he had surgeries all morning but to pop up to the clinic after lunch and he would squeeze us in. So, the morning of the 16^th we went back to Calgary and had the CT and MRI done. We took a groggy Mikey for some lunch, then headed back to ACH to see Dr. Astle for the results. To say we were nervous was an understatement. Keep in mind this all happened during Covid, so only 1 parent could go in. I was with Mikey in the hospital and relaying everything via text to John who waited outside. When Mikey and I got to the clinic Dr. Astle was waiting for us already, never a good sign. He pulled us into a hallway and confirmed the worst. Mikey had cancer. Retinoblastoma. Far more advanced than most cases they see in first world countries. The glaucoma was causing the pressure in his eye to be over 3x the norm. They did not know how he was not in constant major pain. His abuse and neglect as a baby have made him very resistant to pain. Dr. Astle recommended the eye be enucleated as soon as possible before the cancer had a chance to spread if it had not already. They asked me to wait while they made plans with Dr. Gallie, a retinoblastoma specialist in Toronto. I remember Dr. Astle asked what my plans for the weekend were, I told him it was one of my other sons’ birthday. His reply was if you have other plans, cancel them, and get ready to fly to Toronto. At this point Mikey and I were put in an exam room and had to wait for a few hours while they got plans in place. I felt sick, like I could not breathe. I called John to tell him, as well as Mikey’s social worker (they needed to be in the loop through everything until the adoption was finalized). Eventually, I took Mikey down to wait with John as he was restless in the exam room. By the end of the day, I had spoken to several specialist, hospital social workers, and so many other staff. They were all amazing, but it was all a blur. By the time I left the hospital that afternoon we had flights booked, clinic dates and surgery dates for in Toronto. That Sunday, July 20^th, John, and the kids dropped Mikey and me off at the airport in Calgary and it was off to Toronto.

On Monday we had clinic at Sick Kids where we would meet our new team for the stay. They could look at Mikey’s eye, do a covid test on Mikey and get prepped for enucleation 9eye removal) surgery on Tuesday. They wound up admitting us on Monday while we were there as Mikey required several doses of medication to bring the pressure down in his eye to allow for safe removal of the eye during surgery. It was also decided that while Mikey was under for surgery that they would do a lumbar puncture and bilateral bone marrow aspirations to check for cancer spread. Tuesday morning came far to fast. Time for surgery. This baby boy that we had only had with us for not quite two months at this point but loved so, so much had to have his eye removed. That was the first time it all really hit me, and I broke down a bit in front of the doctor while they were getting ready to take him to surgery. I was able to get it together before Mikey could pick up on it though, I did not want him to see me scared or upset when he was facing so much. Thankfully, my husband is amazing and him and the kids were ready for video calls, phone calls, texts, whatever Mikey and I needed whenever we needed. Mikey was eventually taken into surgery and I was left to wait. During the wait Dr. Gallie had me fill in consent for testing on the eye and tumor to further retinoblastoma research and treatment, of course we were happy to consent to this. Pathology would also be done to look for genetic components. A few hours later, Dr. Gallie came and told me that the surgery had gone well, they had to take part of the optic nerve as well as the eye as the cancer has visibly spread to the nerve, and someone would take me to see Mikey in recovery very soon. When I first saw him he was still sleeping, he hadn’t woken up from the anesthetic yet. My tiny boy had a golf ball sized pressure bandage over his eye socket, bandages all over his back, he looked so tiny and helpless. My heart broke then and there. Mikey managed well the first night as they were right on top of his pain meds. The following few days were hard though, Mikey was in so much pain he could hardly move, could not lift his head, and just cried and cried until he would fall asleep from exhaustion. I had to fight for stronger pain meds for him. The retinoblastoma team did not understand why he was in so much pain as the enucleation surgery does not cause much pain at all. They did not take into consideration that he had had a lumbar puncture and bilateral bone marrow aspirations as well until they consulted with the oncologist. The oncologist said with the LP and aspirations sever headaches as well as pain at the site is common, and to think of the areas they took bone marrow from as bone breaks. Slowly over the next couple days his pain subsided a bit. He was able to move and play a bit more. After 5 days in the hospital we were discharged to our hotel, and if no problems arose we were allowed to fly back to Alberta that weekend to await the pathology results and next steps. We made it home that Sunday.

A few weeks later we got the news that yes, the cancer had choroid involvement as well as optic nerve involvement. Two places that cancer can spread to the bone marrow or brain from. Mikey’s LP and aspirations were clear, but they could not rule out there was no spread, and in fact were pretty certain there was at minimum some microscopic spread in his socket or surrounding areas so Mikey would require chemo. For many kids who have an enucleation due to Retinoblastoma the cancer is contained in the eye and once the eye is gone, they are cancer free. No such luck for Mikey. He would require having an IVAD port placed and 4 cycles of chemotherapy. We also found out that Mikey has the sporadic, unilateral type of Retinoblastoma, and likely not the genetic type. Although there was some uncertainty about this. If Mikey ever has children, they do want them to be tested as well.

Time to start chemo was soon upon us. Mikey had surgery to place his port and we were admitted to Unit 1 to begin chemo the next day as well as for a crash course in all thing’s cancer from the amazing nurses. We were told Mikey would be given three different types of chemo, Vincristine, Carboplatin, and Etoposide. We were given the huge list of side effects that can happen with each type and learned that chemo side effects can show up YEARS after treatment. We were informed that Mikey would require 7 days of GCSF injections at home after each chemo cycle too. He would have an insuflon placed and we would inject the GCSF through that, so we did not have to poke his skin each day. You learn to have a steady hand and hit a tiny target fast with that! The next morning it was time for chemo. Watching them hang bag after bag of medication labelled toxic and fatal, knowing the nurses must wear protective gear and used specific tubing so the toxic meds cannot leech through and get on their skin, and knowing that very toxic stuff was being pumped pretty much into our sons’ heart through his port was not easy for John or me (he was allowed in with us this time). The Vincristine and Carbo went well, then came the Etoposide. They had given us a heads up that Etoposide is quite reactive and can cause allergic reactions quickly…. they were not kidding. Not even 30 seconds into his Etoposide he had a small cough. Nothing I would have even thought much about. The nurse knew better. Lightning fast she hit the stop button on the pump and was checking Mikey, who was already going into a full anaphylactic reaction. His face and tongue swelled up so quickly, and his O2 sats dropped. They gave him a big dose of Benadryl to stop the reaction and within two minutes he was out cold asleep. Slowly the swelling went down. The nurse was so on the ball and fast that the Benadryl was enough. The next day his Etoposide was switched to Etoposide Phosphate, given at a slower rate over a longer time and that did the trick. When we were discharged, we were given a port care pack, extra insuflons, swabs, tegaderm patches, syringes, 3 different anti nausea meds, his GCSF injections, and so much else. Our mini medical office. Mikey was a champ with the GCSF for the first 2 chemo cycles, but eventually started fighting it. He required blood draws as often as once a week to tack his counts. He lost all his hair, and some of his eyebrows between his first and second cycles. He got sicker and sicker after each cycle as well. He required several platelet transfusions throughout treatment, lost much of his sense of taste, was constantly pale and tired and so much more. Each treatment was harder than the last. His marrow was getting worn out and the GCSF was not helping as much. But such a strong trooper through it all. He was amazing. The strongest person I know. In September while he was undergoing treatment, he was also fitted with his first custom prosthetic eye. It was not an easy process and is still a challenge when his eye turns the wrong way or comes out. He is not a fan of having it put in or rotated.  Hopefully in time he will adjust. He has trauma issues from his early days, as well as some developmental delays so sometimes it is hard for him.  He had his IVAD port removed in December and moved to Short Term Survivor status. He is still seen by oncology every 3 months, along with blood draws. Through his chemo, and surgeries a lovely day surgery nurse we were introduced to Fostership, an amazing organization that provides care packages and support to families with a child fighting cancer. They are an amazing resource run by a mom who has a child with cancer herself. If I recall correctly, it was her who passed our info along to Kids Cancer Care! KCC got in touch and has been such a wonderful organization to work with. Everyone is so kind, helpful, and understanding. There are so many programs, support, and fun stuff! We were extremely fortunate to be able take part in Glamp Kindle, it was a wonderful couple days to just get away from everything in a beautiful setting. We also receive OT services from Carolina for Mikey, she is so amazing with him and makes the sessions so much fun! We are so grateful for Kids Cancer Care, Fostership, KAM (a fb page for moms who have kids with cancer attending ACH), and all Mikey’s doctors and nurses along the way. Cancer sucks, but the friendships and connections made we will always cherish.