Jessie's Story: A Mother's Day wish

Jessie's Story: A Mother's Day wish
On June 26, 2012 we welcomed our beautiful baby boy Kohen Hans Paschek into the world. He was perfect, born naturally at forty weeks plus one day, weighing in at seven pounds twelve ounces; little did we know that two years eight months later he would be fighting for his life and that the world as we knew it would be forever changed.
It all began on February 14, 2015 with an incident of vomiting. It came out of nowhere and he was fine both before and immediately afterwards. For weeks after there were no other instances so we thought it was due to Valentine’s Day chocolates. Little did we know that this was the beginning of a very long seven weeks of on and off sickness. It would strike shortly after waking in the morning and after his afternoon naps. This would happen for several days and then be gone for days, and all the while he was acting perfectly fine. During this time we made multiple calls and visits to our paediatrician but nothing could be found to be wrong: it was chalked up to a virus/flu bug. 
In late March Kohen woke and had another incident of upset tummy, but this time things were different – he was “off” all day, not playing much and drooling profusely. Later this day he had a seizure. It started with his right wrist and seemed to spread through his whole little body within minutes. After an ambulance trip, 2 milligrams of Ativan the seizure finally stopped. We spent two days in our community hospital with Kohen and our three month old baby girl Everly; only to have him discharged as having had a febrile seizure (even though he did not register a temperature at home that day or during his seizure). Things just never seemed right after this, his balance was off and he seemed to have a Parkinson-like shake in his hands. This was all noticed during our hospital stay but we were assured it was due to having had such a bad seizure. Four weeks went by with no bouts of sickness but his balance remained off and tremors were still very noticeable.
On April 9, 2015 Kohen woke and was sick to his tummy, and his walking seemed to have deteriorated. I loaded both babies in the car at 8 am that day and called my husband home from work to come with us to our local hospital’s emergency department. Once again we were told by the doctor that our son looked great and that he appeared to be a very happy, healthy little boy. He did insist on contacting our paediatrician so that we could go in and see her for follow up. It was now 10 am. We went off to see our paediatrician; she immediately noticed the balance and walking issue and was concerned. She informed us that she would order an MRI but that it could be months as there was a wait list. 
After being reassured by two doctors that day, we went home, but my “mother’s instinct” was telling me something was very wrong; I found myself panicky and feeling very scared. Hours passed, Kohen was sleeping soundly during his nap, but when he woke I was shocked to see that he could barely walk. He was having a hard time putting one foot in front of the other, and I knew something was very wrong. Once again I loaded the babies into the car and called my husband home from work. It was now 4pm and a one hour trip to our local children’s hospital. After seeing the ER Doctor she agreed that his walking was off but otherwise he looked great. She agreed to have a CT scan completed so that I could go home and rest easy - how I wish she had been right. I will never forget the look on her face as she approached the room we were in with Kohen and Everly (both fast asleep) and requested that we sit down. My heart sank. In that moment, my life was forever changed: my beautiful Kohen had a very large tumour in his brain. She informed us that Neurology had been contacted and that Kohen would be immediately transferred to the ICU.
Kohen's MRI Pre-OperationThe Neurosurgery fellow came in to speak with us and had to excuse himself as he could barely get through the conversation with us. It was at that moment I realized I would probably lose my son. 
The following morning we were ushered into a room filled with neurosurgeons, specialists, social workers and nurses, where they informed us that we needed to prepare ourselves to plan our son’s funeral. They continued to explain that they had never seen anything like it and that it looked very angry. The equipment necessary for his surgery was not available until Monday; it was now Friday April 10th. We instantly went into fight mode, demanding that someone who had seen this type of tumour before be found to help our son. Not taking no for an answer (and thanks to my husband’s Google search) we found the Neurosurgery team at Sick Kids who had some of the best neurosurgeons in this country! 
Kohen in hospitalKohen was put under the care of Dr. Drake at Toronto’s Hospital for Sick Children, more familiarly known as “Sick Kids”. Kohen’s immediate transfer was arranged, and with his Dad Karl, was airlifted just hours later. My cousin, his wife and I (with my infant daughter who I was still nursing) made the five hour trip by car. Only hours after landing and with pre-op baths completed, at 6 am on April 11th Kohen began seizing; he had six back to back seizures brought on with just the slightest touch, and was no longer responsive. The tumour had ruptured. He was immediately wheeled down for his eight hour surgery where he was almost lost twice due to heavy bleeding. Even though he received seven units of blood to get through the surgery, he was still here with us, he made it! Dr. Drake was able to remove over 90% of the 14x4 centimetre tumour that occupied over 35% of his brain (which we later learned was a grade IV Supratentorial PNET with cancer spread throughout the lining of his brain and spine). He had a very minimal chance that he would beat this - our world was ending. 
After a three week recovery period at home we were admitted for the first of three rounds of brain tumour protocol chemotherapy. These drugs did terrible things to his little body, and brought him down to his lowest weight of 10.2kg but he went through it all with a smile, full of energy and happy. His doctors couldn’t quite understand. Once the three cycles were complete, we were transferred back to Sick Kids to start his three rounds of mega chemo with stem cell transplant. Knowing the risks associated with this treatment we were terrified with the potential outcome but the caring compassionate care we received was unprecedented. Our nurses and doctors became our friends and social workers with whom we both laughed and cried. They cared so much for all of us, making us feel safe; we never once questioned that we were in the best hands. Kohen again did tremendously well through this treatment!
Kohen with his bravery beads
Finally, the MRI day came and we were numb awaiting the outcome. We couldn’t believe that we had been through almost eight months of treatment, in temporary housing, away from our familiar home - we were all so displaced but we didn’t care if it meant that we would get to keep our son. We received the news that we never would have expected: the cancer in the lining of his brain and spine was gone and the tumour bed had significantly improved, (although there was a very small area of concern). We were thrilled! The doctors couldn’t seem to stop smiling as we discussed the results.
After reviewing the MRI with the radiotherapy specialist it was agreed that something should be done to address the area of concern via radiation. The standard treatment for Kohen’s condition is whole brain and spine radiation; the outcome of this treatment would have given a much higher success rate and longer life expectancy but at the cost of Kohen not being a fully functioning adult. Chances were that he would require lifelong support. 
At the beginning of our journey, my husband and I had decided that we would not be selfish, and not do just anything to keep him here with us; our decisions would always be based on Kohen and what was in his best interests. Our priority was to keep him as the son we knew in both mind and body. With this in mind, we decided not to go forward with the recommended treatment but did agree to focal radiation.
Kohen's Current MRIThis treatment was high dose radiation to the tumour bed with very minimal radiation to good healthy brain. With this option, no life expectancy numbers were given because if a cancer cell remained in another part of his brain or spine, it would not be treated. Kohen completed six weeks of daily radiation under general anaesthetic and again came through this with no issue!
Kohen amazed us all with his strength, and it all paid off when just one month ago we learned that he has no evidence of disease!! Words we never would have expected to hear. He will be followed closely with full brain and spine MRIs every three months. 
We find ourselves holding our breath everyday in fear that it will return but we have hope that it won’t. The world as we knew it is gone. Our lives have been forever changed. But waking to our beautiful three year old son looking and behaving as normally as any other three year old little boy is just amazing. And it is all because of the care we received at the Hospital for Sick Children. Without the research that has been done in the Stem Cell field, we probably wouldn’t have our son here with us today.
Kohen is our inspiration and he gives us strength to keep going. We are so honoured to call him our son.
Jessie McDonald
Cancer Mom
Thank you Jessie for sharing your story of advocating for yourself and your family!
We wish you the best possible Mother's Day and hope that Kohen continues to go from strength to strength!

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