Diagnosis: Retinoblastoma
Mikey’s story is a bit of a long one, and likely a bit unusual to most. Mikey is three years old and was diagnosed with retinoblastoma when he was two 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, let’s start at the beginning….
Mikey was born in 2017. At nine months he was 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 information sharing 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 four-day process) we noticed several things about his left eye within minutes of meeting him. The iris of his left eye was a different colour than 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. 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 the eyes do not properly align with each other).
When we asked the foster parents about his eye, they informed us that the iris had changed colour overnight over three months prior to us meeting Mikey but that they had not ever noticed the rest. They hadn’t taken him to the doctor to have the eye looked at. If they had, his cancer may have been diagnosed much sooner and his eye may have been saved.
We completed transition and brought Mikey home on the evening of May 24th. The morning of May 25th we took Mikey to the 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 7th 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 (Alberta Children’s Hospital) then and there to have us transferred to their care.
July 15th, we had our appointment at ACH where we met Dr. Astle. He again confirmed Mikey had no vision 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 16th 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-19, so only one 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 three times the norm. They did not know how he was not in constant major pain. The abuse and neglect Mickey endured as a baby has made him very resilient to pain.
Dr. Astle recommended the eye be enucleated (eye removal) 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.
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 20th, John, and the kids dropped Mikey and I 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-19 test on Mikey and get prepped for the enucleation 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 during surgery. It was also decided that while Mikey was under for surgery that they would also do a lumbar puncture and bilateral bone marrow aspirations to check for cancer spread.
Tuesday morning came far too fast. Time for surgery. This baby boy that we had only had with us just under two months but loved 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 whenever Mikey and I 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 cancer has visibly spread to the nerve.
When I first saw Mikey, 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. 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 a LP (lumbar puncture) and bilateral bone marrow aspirations as well until they consulted with the oncologist.
The oncologist said with the LP and aspirations cause severe headaches as well as pain at the site, 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 five days in the hospital we were discharged to our hotel, and if no problems arose, we could go home 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 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 four 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 one 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 seven days of GCSF (granulocyte colony-stimulating factor) injections at home after each chemo cycle too. He would have an insuflon placed and we would inject the GCSF through that.
The next morning it was time for chemo. Watching them hang bags 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 that very toxic stuff was being pumped pretty much into our son’s 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, but the nurse knew better.
Lightening 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 oxygen SAT’s 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, three different anti-nausea meds, his GCSF injections, and so much else. Our own mini medical office.
Mikey was a champ with the GCSF for the first two chemo cycles, but eventually started fighting it. He required blood draws as often as once a week to track 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.
Mikey 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 he was 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.
Mikey had his IVAD port removed in December and moved to short term survivor status. He is still seen by oncology every three months, along with blood draws. Through his chemo and surgeries, a lovely 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!
Kids Cancer Care 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 camp Kindle; it was a wonderful couple of 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 Facebook 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.
Mikey’s adoption has also now been finalized. It was finalized on March 15th. He’s legally a Crawford and ours to love forever now.
~ Mikey’s mother Tannis
Mikey’s forever family at Camp Kindle
A bit of protein for a growing boy
Getting creative
Beautiful smile