It has been two months since our last update. 

I have to write. This is the happiest day of my life. 

Last week, we received a surprise phone call from CHEO Orthopedic Surgeon Dr. Kevin Smit – one of THE top pediatric orthopedic surgeons in the world. 

We’ve been on his surgery wait list for the last nine months with the guarantee to wait at least another full year to get spinal fusion surgery for Alyssa. He was our second opinion at CHEO and he offered to help both Alyssa and Hillary together as they overcome Idiopathic Adolescent Scoliosis. One opinion is just never good enough.

Facing the unbearable two-year wait for surgery, we requested a referral for a third opinion with the Shriner’s Hospital in Montreal and had just begun the consultation process to bring Alyssa to Montreal or Philadelphia for treatment. Their wait list was also too long. 

I contacted MPP Goldie Ghamari and asked to represent my cause to the Ministry of Health. I reached out to the most trusted Patrcia Boal of CTV to beg for a platform to raise awareness. I signed and shared the new petition and reached out to the Ottawa Mayor Mayor Mark Sutcliffe to engage with Scoliosis Awareness Day. I tweeted Doug Ford. Sylvia Jones. Justin Trudeau. I didn’t get anywhere and it haunted me daily. 

To CHEO, I wrote several formal complaints to Patient Experience. I complained to the then President and CEO, Alex Munter. I wrote a formal letter of concern to the Head of Orthopedics. 

We travelled out-of-province to Montreal expert Orthotist Peter Duma instead of waiting three months for Ottawa’s Rehab Centre. We sought out options for private surgery with unknown surgeons with unknown credentials. We requested early intervention by Schroth Physiotherapist Andrea Lebel. We consulted Scoliosis Expert Dr. Derek Lee in Toronto who basically showed us every door to knock on. 

We begged CHEO to be on a cancellation list. They said they rarely have cancellations due to the long wait list and when they do, they seldom have families who can mobilize that quickly since there is a great deal of preparation involved.

But when that last-minute cancellation due to viral illness came through in the late afternoon, Dr. Smit said, “I know a family. The McKibbins will do it.” 

We went from hopelessly waiting for someone to help Alyssa to her being completely healed. We arrived home from the hospital just this past Friday and her surgery was a tremendous success for both us and CHEO. 

If we had said no, CHEO would have had to close their operation room and send two surgeons home. The hospital would lose money. Lose the opportunity to help someone. Someone like us so desperately wanting it. 

We didn’t want to wait. CHEO didn’t want to close their OR. 

We were all looking in the same direction.

After a quick conference call, we pulled Alyssa from English class and left for the hospital. When we told her her life-changing surgery would be within the next 18 hours, she knew right away that it was the chance of a lifetime and said yes immediately. We’re so proud of her.

That night was busy with the pre-op tests required to proceed. Alyssa required an MRI, a CT scan, spinal x-rays, blood work to check her CBC and electrolytes, and a lengthy consult with Anesthesiology. 

Moving through all of those departments with that speed in one evening doesn’t happen often. We were ushered through every door with urgency and kindness and it was just wildly fun for everyone. No time to worry about a thing. 

Also, no time to prepare. We went home to pack our bags, prepare Alyssa’s body, catch a few hours sleep, set Hillary up for success, and leave for surgery at 5:30 am. The doctors had to wake Alyssa up in order to put her to sleep, she was so tired and comfortable at CHEO. 

Alyssa’s six-hour spinal fusion surgery included the placement of three IVs, a tracheal intubation breathing tube, a two-day catheter, a blood drainage tube from her spine, acupuncture needles from head to toe to check for nerve movement – in addition to the full back incision and the placement of 13 screws and two rods made of cobalt chrome. They cut her muscles and sewed them back together. Drilled her vertebrae. 

It’s a good thing she happens to love the Saw movie franchise. CHEO said having Saw slippers was definitely a first in their surgery ward. 

I poured cups of blood from her spine. I wasn’t prepared for that. She almost reached the transfusion threshold (hemoglobin below 70) but…I had to be reminded, she’s not like Hillary. She can make more.

I learned a great deal about the resiliency of our bodies.

Our stay was extended to seven days (instead of the usual three days) due to some minor complications post-surgery and while I’ll disclose it was quite difficult on Alyssa’s body, she was so well-taken care of every step of the way, she agrees it was all very much worth it. 

We can’t believe this has happened. We’re all a bit in shock. 

I think we just received the best medical care in the world. 

A great many obstacles popped up the day before Alyssa’s surprise surgery to make it extra challenging, as usual. I got a flat tire. Hillary’s bedroom door broke right off the hinges. The pressure switches on our furnace needed immediate replacing. The UV light in our water filtration system burnt out. So many heroes stepped up to help and without them, we would have been in trouble. 

But one of the most concerning challenges was figuring out how to stay safe in the hospital during our stay. As soon as Alyssa went under, we reached out to CHEO’s Patient Experience department (who handles parent concerns) and they booked a boardroom for us to discuss the matter.  

I outlined all of my concerns quickly in writing to be kept on file. I contacted the COVID Council of Canada and provided documentation which supported our request for safety. I cited UN Resolution 76/132: Addressing the needs of persons with rare disorders and their families in our quest to stay infection-free. We contacted Hematology to get their support regarding Hillary’s condition. I contacted a prominent epidemiologist in BC for legal advice. I offered to go to the media. 

I explained the ramifications of what would happen if Alyssa brought home a hospital-acquired infection which sent her sister back into bone marrow failure. How detrimental this would be for the community to witness that our own children’s hospital can’t protect its vulnerable patients from a contagious, pathogenic coronavirus when undergoing a medical procedure. There was coughing in almost every other room, including the nurses’ station. 

I gave it everything I had. For Hillary. 

The Charge Nurse that day understood my desperation. She knew about bone marrow failure. She was truly an angel sent from heaven. She granted our stay in the isolation room as a social consideration based on space availability. The ONE room equipped with special ventilation, reserved for those who are immunocompromised themselves or for those who have an active contagious, viral infection. The C02 levels stayed consistently at 450 and we felt so very safe the entire time. 

Hillary could not have been more appreciative. 

To make SURE I got back to her, I wore my N95 mask for 24-hours-a-day, for 7 days straight. I went outside to scarf down a daily sandwich but never left Alyssa’s side. We had vitals and visits every two hours for days and there was no time for anything but her recovery. 

I feel amazing being home knowing I have not brought anything home to Hillary. I don’t feel it was a hardship at all, particularly after seeing all of her doctors and nurses in masks all day long. I don’t how our family would have fared without the isolation room. It makes me crazy to think about how unfair it all is – for everyone. 

As a precaution, Hillary moved into the new pool house before we came home. She says she’s never moving back. She’s so happy back there! She’s always entertained with a few friends on the phone and she’s just the most independent, joyful person I’ve ever met. She did very well while I was gone. 

The kindness we experienced at the hospital is… almost indescribable. Every single one of Alyssa’s nurses was knowledgeable, patient, and hard-working. I have a new-found appreciation for the staff at CHEO. For the processes. The collaboration. Innovation. The dedication and selflessness. 

I had forgotten what it was like there. It’s going to be difficult to pay this forward, but I will try. 

In the days leading up to that surprise phone call, I had been praying and meditating and manifesting day and night for Alyssa’s condition to go away, but I kept getting hung up on the impossible part. I couldn’t find a way to fix her without someone else physically intervening. 

I had conceded that my prayers just would never be enough. 

I knew I needed a miracle. 

Can you believe it actually happened?

Before Dr. Smit called, our family hid quietly in the shadows, desperate for someone to see our suffering. It consumed me, and I know it was too much for Alyssa to bear also. We were waving our arms in the air but no one could see them. We were fighting a losing battle against the government for more resources, and the only person losing was our kid.  

CHEO shone a light directly on us so we could share our story of hope with others. So we could show they are committed to using whatever resources they DO have to help children. To reiterate their promise to do no harm. Alyssa has a short path to a full recovery and we owe a serious debt of gratitude to a great many people right now for getting us here. I vow to continue to advocate for these causes which require attention.

Our family is overjoyed and most grateful for this opportunity. 

It is truly the best feeling in the world when your children are in good health. 

Nothing worth doing ever came easy. 

Never ever give up. 

#StartWithHillary