Our son Cohyn Joel Jaskela was diagnosed at 14 months old with ATRT (atypical tetatoid rhabdoid tumour), which is a very rare and aggressive brain and spinal cord tumour.
About a week before taking Cohyn into the hospital, I had measured his head, which sounds weird, but I was a nurse at the Alberta Children’s Hospital and I worked on the neuro unit. To this day I still do not know why I measured his head, but I did and we thank God for that. His head circumference went from 50% to 96% in less than two months from his 12-month checkup.
The day before we took Cohyn into the hospital he started to lose his balance and was saying less words. By the time we got him to the hospital he could barely sit on his own and was not saying any words. But he was still happy little Cohyn, waving and showing off for the doctors and nurses.
We did not have to wait in the emergency waiting room as they took us right in and within 45 minutes Cohyn had a CAT scan, which showed a massive tumour in his brain and throughout his spinal cord. He also had massive hydrocephalus, which is fluid collection on the brain.
At first we could not believe it. Cohyn was always a happy and very healthy child, never even had a cold in his life. We were not angry, but in disbelief and only wanted to know what we could do to help our special little boy. I also struggled with the idea that I am a nurse and should have caught this earlier.
Right after Cohyn had a CAT scan he received an IV and then went for an MRI and straight into ICU. Within 26 hours of us bringing Cohyn to the hospital he had so much increased pressure in his head that he actually coded, which means he stopped breathing and his heart rate was lower than 40 beats per minute. They could not even get him into the operating room and had to put an emergency EVD (external ventricular drain) into his head in the ICU and he was ventilated. He was only ventilated for 24 hours and then the pressure lowered and he started to breathe on his own again.
Since Cohyn’s brain surgery was so big the surgeon wanted to have his team do the surgery, so we had to wait five days over a weekend to get the surgery done. That was a very long wait as we were both very anxious, but knew that everything was in God’s hands and Cohyn would come through the surgery.
The day of his brain surgery we were very nervous and I don’t think either of us had slept for almost a week. I remember going back to Ronald MacDonald House and just lying in the bed, unable to sleep, so we came back to the hospital early, even though we knew the doctor would call when they were done. Cohyn’s first surgery went really well. It was 3 ½ hours long and they got 95% of the brain tumour, but would not do surgery on the spinal cord as it was too dangerous.
Cohyn was doing really well after surgery and we both thought we would be out of the ICU quickly and starting chemotherapy on the Oncology unit soon, which changed very quickly. Within 3 days of surgery Cohyn started to have seizures and his drain was leaking because of increased pressure. Our brave man Cohyn had two sutures with no freezing to stop the drain from leaking. I thought I was going to faint, as I was in the room for everything and would not leave. A couple days after this he had more seizures.
Cohyn was now on a large dose of seizure medication that his body kept metabolizing too quickly, so he would have more seizures from a low concentration of the seizure medication in the blood stream. They finally stabilized his medications and pulled his EVD drain out and we are off to the Oncology unit. We were very excited to get started on the chemotherapy as that was ultimately going to help our child.
When we got to the Oncology unit, we had many teams following us and we almost felt overwhelmed for the first couple days. They all wanted to do exams on Cohyn. We had ICU, Oncology, Endocrine, Neurosurgury, Neurology and Hematology. Within a couple days of being on the Oncology unit, Cohyn started to get a bubble of fluid on the top of his head, which meant increased pressure and back to ICU. He had a CAT scan and off to surgery for another EVD drain. More complications. More CAT scans and more surgeries. They had to insert an internal shunt, which is a drain from his brain to his belly.
We could not believe what was happening to us. Our poor little Cohyn had to go through so much. It had been two weeks and we had not even started chemotherapy yet. We got through every day finding something positive about the day and engulfing Jesus strength, courage and wisdom. Also Cohyn’s happiness and laughter really helped us through. He was our inspiration as he was the one going through all these terrible things and yet he was so happy. It was all about playing for Cohyn!!
We finally made it to the Oncology unit and started chemotherapy. We started on a protocol which would be four months in the hospital with five different rounds of therapy. The first two rounds involved five different chemotherapy drugs, one of them high dose Methotrexate, administered within a week.The last three rounds involved two different high dose chemotherapies with stem cell transplants. We were nervous, but excited to start chemotherapy, so we could move on with our lives, not realizing that the worst was yet to come.
Two days into the chemotherapy, Cohyn started to develop signs of increased pressure in his head. Of course this was at 1 am and off for a CAT scan we went. The findings were devastating as he had massive, massive blood clots that had developed in his brain. We were back in ICU and could not make it to the operating room and had to externalize his shunt, which meant taking the bottom end of the shunt out of his belly to decrease the pressure, which was done in ICU.
They then told us that we had to put him on a blood thinner, but because he had just had surgery the potential to bleed was very great. Still, the potential for a stroke was greater. We were faced with another very big decision. We chose to put him on heparin and pray that he would not bleed. Our prayers were answered and within 72 hours we were back on the Oncology unit.
The next day he had an MRI, which showed that the blood clots were not getting any bigger, but the tumour on his spinal cord was bleeding into itself. If it ruptured it would be fatal, so again, we were faced with a very big decision. Should we start him on chemotherapy again with such a big risk of this tumour rupturing? With the help of our Heavenly Father we started him on chemotherapy and within a couple days that tumour stopped bleeding. After we finished the round of chemotherapy, Cohyn was back in for another surgery for another shunt.
If you can believe it, by this surgery we were not as nervous and it was almost normal to us. We just gave him a kiss and off he went with the nurses for another surgery. He never had a care in the world!!!
Again, the next day after his surgery, another CAT scan to make sure the shunt was in the right spot and that his brain was tolerating all the procedures. I remember the first time he went in for a CAT scan and MRI how nervous we were and how upsetting it was to see our precious child have to be put to sleep for the MRI or held down for the CAT scan. Now, it was almost normal to us, as he had been through so much in the last month.
The next two weeks were full of tests and tests and more tests. Cohyn had to have an ultrasound of his kidneys to make sure the tumour did not migrate there. He had problems with his heart rate dipping really low, so he had many CAT scans, ECGs and a 24-hour ECG monitor (Holter monitor). He also got an infection from his mouth sores and teething, so that meant antibiotics and a shunt tap, which is a needle through his head into his shunt, to make sure there is no infection in his shunt.
Cohyn also had to have blood work done every four hours and, even though he had a central line, they had to poke him for his blood thinner test as well as two pokes a day of heparin in his legs. It felt like everyday was so busy with all the tests, doctors and nurses checking Cohyn as well as his own play time.
The next step was to collect stem cells, which was done in ICU and they had trouble getting a femoral line, which delayed our chemo by a week because he had an open area in his groin from all the pokes. Every day, it seemed like something else was going wrong. Then his heart rate was really high and he had to go for another Echo and ECG. His central line was blocked, so we had to go for surgery for a new broviac. Cohyn was also vomiting so much from the chemotherapy that he was started on IV nutrition.
We felt so bad for Cohyn that nothing ever seemed to go right for him. It was always one thing after the next for him, but as long as he could play he was happy. He was so forgiving and loved everyone. Jesus’s love lit up his eyes and shone through to everyone around. He was our amazing little man!!
Throughout this journey Cohyn found happiness in everyday. We have so many fond memories of Cohyn in hospital. Since he was a transplant patient he was right next to the nursing station. This was great for him as he loved to sit in his stroller in his doorway by the nursing station and flirt with the doctors, nurses, cleaning staff and anyone who would walk by. Cohyn loved giving high-fives and blowing kisses to everyone.
His other loves were his toys, music, books, and of course, the playroom. Once a week the music therapist would come into Cohyn’s room and they would play instruments and sing songs for hours. We would also go to the playroom everyday for a couple hours and Cohyn would play with all the toys there. I still don’t know how we managed all the lines and Cohyn crawling, but we managed.
Cohyn really enjoyed when the sports teams and Paul Brandt came in to visit. He also loved playing BINGO and watching the clown. Another fond memory was one day when the clown was in the playroom and the kids were playing the laughing game. This was right up Cohyn’s alley as he loved to laugh and would laugh all the time out of turn. From this experience Cohyn learned to laugh in many different ways and his laugh would change from time to time. Even through all the tests and procedures, as soon as the nurses were done, he would give them a high-five or blow them a kiss. He loved everyone and was very forgiving, which made this experience a lot easier.
The next step was getting ready for the stem cell transplants which meant Echo, ECG, MRI, lumbar puncture, chest X- ray and X-ray of the wrist for bone density, urine samples, throat and nasal swab and blood work. We were a little nervous with Cohyn starting stem cells transplant, as we had known another child who had gone through this protocol and had trouble and ended up in ICU with problems with his lungs. We just had to trust in God and accept that it is not in our hands and Cohyn would do great and HE DID. Cohyn breezed through three rounds of stem cell transplants, which included a bath every six hours, dressing changes around the clock, all the monitoring and isolation. His lungs, heart and hearing were all protected and he had no damage to any organ.
He did have trouble with vomiting and fevers, which kept us in hospital longer. All we wanted was to take him home since we had been in hospital since July 12, 2007.
Miracle after miracle happened and we were able to take Cohyn home on December 8, 2007. We were so excited and he was doing excellent. The MRI showed only a pea-size tumour in his brain and a small tumour on the C1 section of the spinal cord.
It was amazing to see how all the tumour had disappeared without radiation. Since Cohyn’s tumours were extensive and spread throughout his brain and spinal cord we choose not to do radiation, as it would have disabled him and throughout this experience, our focus was always “Quality over quantity of life.”
We left the hospital on an oral chemotherapy, which was a trial drug. Cohyn was doing really well. We were loving our life with him at home. Cohyn had another surgery to remove his central line, had an EEG in order to make sure he would not have any more seizures and was slowly coming off all his medications.
He was feeling so good that we took him to Arizona, Mexico, Niagara Falls and all over British Columbia. We would have never guessed that the next MRI would show a fuzzy spot, which they thought was nothing, to Cohyn relapsing right after his second birthday with no signs or symptoms. Cohyn was starting to walk on his own, was talking more and was playing more independently, who would have ever imagined. We had just gone in for a scheduled MRI. We could not believe it.
We were faced with all the decisions again. How could this be? How could our son Cohyn, who seemed so healthy, relapse and need to go through more treatment again?
We made the decision to start him on the IRS 3 protocol minus the radiation. The next day, we were back in the hospital, getting a Port (central line) surgically inserted. This surgery was upsetting, but we knew it had to be done for our child to get rid of the rest of this terrible disease.
We decided to do this protocol through the out-patient clinic, which meant taking Cohyn home and then bringing him into clinic on the days he needed chemotherapy, blood work and other tests. Cohyn did have to be admitted when he went neutrepenic and got another fever. This was very disappointing as we had spent so much time in the hospital and could not imagine spending more time in the hospital, but we did whatever we had to do to keep our special boy as safe and healthy as he could be.
We finally had some good news as Cohyn’s MRI came back with the tumours shrinking. This meant that the chemotherapy was working. Cohyn went in to have his shunt removed and a G-tube inserted.
Cohyn was doing really well again during the summer. We always treated him as if he was not sick. He did everything that a normal two-year-old would do. We took him to the Calgary Zoo, Calaway Park, West Edmonton Mall, the mountains, rodeos, camping, swimming at the lake, on the boat and on the golf cart and more. Cohyn thrived on our positive energy and made every moment of his life count.
These happy times ended quickly in October, 2008, when we brought Cohyn into the hospital, thinking he was vomiting from an allergy to the antibiotics. To our surprise, as Cohyn had no other signs or symptoms, his tumours were growing, but this time they were a superbug and in an area where they could not do surgery.
The pressure in his head was so great that he went in for emergency surgery and had an EVD drain put in to decrease the pressure. About three days later, he went for another surgery to have a biopsy done and another EVD drain inserted, as the spinal fluid had too much blood in it to put in an internal shunt. We waited about another week to get an internal shunt put in.
In the meantime, Cohyn was such a happy kid as long as he could play ball, hockey and go to the playroom. One of my fondest memories of Cohyn during treatment was chasing him around the hospital with two IV poles as he played hockey with the doctors and nurses in the hospital hallways, laughing and saying, “HOCKEY, HOCKEY!!!” He sure loved hockey.
We actually took him to the Calgary Flames game two days before his last admission to the hospital. We sat third row and his eyes were so big. He would not even talk to us and kept pointing at the ice and the hockey players. He sat through two whole periods and would have watched the third, but we had chemotherapy the next day, so we had to leave early. Cohyn loved sports so much. When we were in clinic getting chemotherapy, we would turn on the sports channel instead of cartoons, so he would sit still during his treatment.
We decided to start Cohyn on an experimental drug, which meant going to the clinic almost everyday for chemotherapy for one week and then the next week off. When on experimental drugs, it is a very strict protocol and Cohyn had to have many tests pre-chemotherapy. He had an MRI, ECG, Echo and lots of blood work.
By this time we were so used to all these different procedures and we thought he was too as it was not a fight to get him to sit still for the procedures.
The day before we started the experimental drug we had to take him into the hospital as he was vomiting. To our surprise, his tumours had increased 30% and we had another emergency CAT scan. We completed four days of the experimental drug and Cohyn had a massive seizure, which had us back in the hospital. Never to leave again. Cohyn Joel Jaskela went to be with Jesus on December 23, 2008.
Throughout this journey with Cohyn, our family, extended family, friends and even strangers learned so much from a special little boy, who really could not even tell us what he thought. Through his gestures, he brought happiness into a very sad situation. Cohyn never felt bad for himself. As long as he could play, he was happy. He brought courage, love and trust into every situation in life and was determined to live life and life abundantly.
We were very fortunate to have a great support system between family, friends, hospital staff and Jesus. When times were tough, there was always someone there to lean on. What was very important to us was keeping a strong marriage with positive energy and Cohyn sure thrived on that. One way we accomplished this was having grandparents stay the night, so we could get some sleep, while they had time to spend with Cohyn. This also gave us a chance to leave the hospital and spend some quality time together.
We keep telling ourselves the only thing worse than watching him leave this earth is the possibility that we may have never known him at all. Even without speaking, Cohyn taught us the true meaning of life – love and friendship with a rock foundation. The little things really do not matter. Cohyn redefined the meaning of “fight the fight” and we are so proud of him. We just thank God that we had the extra year and a half with our special angel and that we will eventually be with him for eternity.
Babies are angels who fly to the earth. Their wings disappear at the time of their birth. One look in their eyes and we’re never the same. They’re part of us now and that part has a name. That part is your heart and a bond that won’t sever. Our baby Cohyn is an angel and we love him forever.
~ Cohyn’s mother Trisha
Read more about the Jaskela family and Cohyn’s living legacy here.
Cohyn’s Photo Gallery
