A Long Journey....
October 29, 2020, 9:43 am
As many of you know, our family went through a very tough past year. Our oldest son, Lenox, was
diagnosed with Leukemia one year ago. He had been feeling very tired and was weak, eating less than normal, and was complaining of headaches and stomach aches. We knew something was not right. October 22, 2019 Lenox went into our family doctor for a (routine) checkup as he just was not himself the previous few weeks. After meeting with our doctor, Lenox was ordered X-Rays of his lungs as well as bloodwork.
Later that day, our family doctor called us back to his office and told us there was an abnormality with Lenox’s blood cells; he was not producing enough white blood cells, his “fighter cells”, or red blood cells, the “clotting component”. We were speechless. What did this mean? How do we fix this? What did we do wrong? Will he be okay? So many things ran through our minds and we just did not understand how we got here. We were told to immediately pack our bags and head to Saskatoon to the Jim Pattison Children’s Hospital. They were expecting us.
Upon arrival in Saskatoon around 11:30 pm, we were escorted to our room in the Oncology department. Nurses and Resident Doctors swarmed our room. Lenox was immediately hooked up to an IV, he was ordered IV antibiotics and would immediately start blood and platelet transfusions. There was constant traffic of nurses and doctors throughout the night. In the morning we met our Oncologist, hopeful for some answers. Instead, she explained to us what our possible diagnoses were. And she said the word… the word no parent ever wants to hear… Cancer.
We were prepared for some tough news, but not this… We were devastated. Our hearts broke for our boy. We blamed ourselves. During these first three days Lenox had multiple blood tests, scans, vital checks,
neurological tests, Lumbar Puncture and Bone Biopsy. This was also the first time Lenox had ever been under anesthesia. But he was strong and brave through it all. It took three days for the tests to confirm Leukemia, which seemed like a lifetime.
We spent the next three weeks in the Jim Pattison Children’s Hospital. Those three weeks were the absolute hardest three weeks of our lives. We watched as our son spent his 8th birthday in the hospital, being too tired to celebrate, to weak the watch movies. (we were even provided a private theatre for just our family) and too heartbroken to understand. It seemed each day was getting harder and harder; blood draws twice a day every day, hoping the numbing cream would work; until the time that it did not. This made blood tests going forward scarier and more difficult for Lenox. He was attached to an IV 24-7, around the clock oral and IV antibiotics, fluids, and vital checks.
He was quarantined for the first five days to prevent spreading or catching any infections. We tried to make sense of it all, and to explain to Lenox what was happening, even through we did not know ourselves.
The hardest part was explaining to him that he had Cancer. It took us nearly a week to say the word out loud.
Seven days later Chemotherapy started. And everything started to slowly turn around. Lenox’s first surgery for his Port implant was abruptly put on hold due to a fever but was able to have a PICC line to replace the IV line in his hand. This gave him an easier and less painful access to antibiotics, and to blood draws. Within two weeks Lenox was able to have day passes to leave the hospital around his antibiotics schedule. He loved these day passes; he was able to escape his room, the hospital, the nurses, and the doctors. A quick break from tests, medication, and vitals! Although we had to avoid his favorite places -Toys R Us and Walmart - due to the crowds, he was eventually able to mask and glove up and make his way there! These were the little moments we saw a bit of happiness in his eyes.
We spent the following weeks in Saskatoon learning about Leukemia and of Lenox’s diagnoses. Thankfully, Leukemia is the most common childhood cancer and treatment is very advanced. There is a 99% survival rate/curability to his diagnoses which gave us hope. We learned about the medication he would be taking; how they effect his body, how it will help target cancer cells, but how toxic it can be. Some had awful side effects; weight gain, personality altering, hair loss, increased/decreased appetite, nausea, just to name a few. But we are so very fortunate that Lenox experienced the mildest side effects of the majority of his medications.
During this time, we were also expecting the last addition to our family. Being 20 weeks pregnant at the time of diagnosis posed its risks to the baby as well. Thankfully, the nurses and doctors also taught us how to keep the baby safe, and how to properly and safety handle and administer medications, how and to keep ourselves safe for toxicity. After two weeks, we were graciously offered a condo to ourselves from a close relative, and we were able to partially move ourselves for the remainder of our stay in Saskatoon. Lenox continued to be an inpatient for another week, and finally Hanna, Lenox’s little sister was able to join us in Saskatoon where we were able to spend time between the hospital and the condo. But trying to explain to a two-year-old why her brother was not himself and in the hospital and why only mom or dad were there at night posed its challenges as well. But after three weeks, Lenox was able to move into outpatient status for the remainder of our Saskatoon stay (approximately four weeks).
During this four week there was so much more going on than Leukemia. Before Lenox’s diagnosis, we had sold our family home and possession date was during our time in Saskatoon. We were not able to be there. We left our home in shambles with dinner still on the table, beds unmade, and laundry unfolded. Our business was left to our staff to fully operate in our absence only a moment’s notice. Jobs were immediately put on hold with nothing less than full understanding from our customers. Our family and friends immediately jumped to our aid. An army of friends and family pulled together to pack our home, box up our items, all our memories, and move us across town. Lenox’s teacher organized a Go Fund Me page, which was one of the most humbling moments to date, the Keeping Lenox Safe online Auction had an overwhelming response. Lenox received so many gifts, phone calls, notes, and videos while he was in the hospital. These moments brought the life back into his eyes and a smile back to his face. But it did not stop here. Upon coming back to Moosomin, we were not coming “home.” We were coming back to an interim house where we spent the next 6 months. Once again, our army of friends and family and community came together for us and moved us, yet again. Unpacking our bags, and boxes so we had a warm welcome home.
Going through the next few months transitioning into real life was made a little simpler because we had such a great support system. The Keeping Lenox Safe Committee donated hand sanitizing stations to Lenox’s elementary school. His teachers posted information about Lenox and his diagnoses and helped to educated other staff, students, and families about his illness. Lenox’s grandparents opened their home for five days in February as a cold hit our home hard and Lenox would be at risk of catching it if he stayed home.
They say it takes a village to raise a child. In our case, it has taken the village to keep one of the most precious things in our life safe, and able to live a normal life. Without the help of our village, the world would be a little bit scarier for him and our family.
The year continued to pose more challenges; we welcomed our baby boy, Leif, only one day before COVID-19 hit Saskatchewan. It was on that day, March 11th, 2020 we decided to lock down our home. We spent 3 weeks together in our home trying to navigate through each day as safely as possible. April 2020 Lenox was scheduled for 2 weeks of daily chemo in Saskatoon at Jim Pattinson Children’s Hospital, during the height of the pandemic. As Lenox headed to Saskatoon, it split our family into two during the weekdays for 2 consecutive weeks. Upon completion of the two-week treatment, Lenox caught his first fever. A fever is an indication of a bacterial infection which Lenox’s body is not strong enough to fight on its own. This is Lenox’s first (and only) unscheduled hospital stay, and because of COVID regulations, this was also Lenox’s first COVID test. We were confident the test would show negative, however, protocols required Lenox to be quarantined for 2 days until the confirmed negative test results were back. Five days in the hospital and Lenox returned home good as new!
As the weather warmed up and we were able to slowly start leaving the house and as Lenox’s blood counts continued to rise, the year was looking more optimistic. He was beginning to feel better, and medications did not take the same toll on his little body. As we moved from block to block of his treatment, we were quickly seeing the end of the first phase. The count down was on! Our lives were starting to take a different shape than it had looked just months before. Instead of counting the days between treatments, we started counting how many weeks were left until monthly treatments started. August 2020 was the end of weekly treatments, and the beginning of the Maintenance Phase. Originally, the Maintenance Phase was to include daily oral chemo, monthly blood tests, monthly doctor checks, monthly IV chemo and five days of an oral steroid as well as one lumbar puncture. But after meeting with Lenox’s Oncologist, we were so fortunate to have a change in the treatment schedule, daily chemo, monthly blood work and monthly doctor checks. IV Chemo, Steroid and Lumbar Punctures have been moved to every 4th month!
The past six weeks have been tricky transitioning back to school, extra circulars, and socializing due to COVID-19, but Lenox is enjoying the time he gets at school and with his friends and family.
A Heartfelt Thanks
This next part pulls at my heart strings in many ways. As mentioned, over this past year we have had an overwhelming amount of support.
We are so humbled by the love we have received from our friends, families, and community. When we started going through the list of names, we quickly realized there are people we have not met, and there are more than just the people on the list.
Our small army has quickly grown to a community wide army that has continued to support Lenox and our family, through prayers, blessings, donations and simply just being aware of Lenox’s illness. I have written thank you a million different ways and none seem to mean enough.
There are absolutely no words that are meaningful enough to express our gratitude and our love that we have for each person that has helped us along the way. From our amazing Oncology team in Saskatoon and in Regina, to Dr. Van who trusted a mom’s gut instinct and our fabulous local doctors that are only a phone call away, to our local nurses who make every visit as comfortable as possible, our Pharmacists who have helped picking out the right humidifiers, searching for special hand sanitizers, making meds tastes better than awful, to our schools and caregivers for educating staff, students and families, holding fundraisers, special themed days and Halloween costume party do-overs as Lenox missed Halloween.
Thank you to the members of our community for taking the love and the care into supporting our family, to the strangers and passer-by who are compassionate, even just to ask, “how is Lenox is doing?”.
To our amazing staff of Devo’s Plumbing and Heating for taking the reins on our business and keeping us afloat during our time away, and to everyone who keeps
us in your blessings and prayers.
Finally, to our friends and families; for taking the time away from your families and doing the things we could not. Driving miles to see us and bringing Lenox a little piece of home at every visit. Thank you for the phone calls, and text messages to make sure we are okay. Thank you for allowing us to cry and be angry and helping us be strong through the times where we felt weak. Thank you for understanding something that cannot be explained.
Thank you for crying with us, standing with us, loving us, fighting with us, and growing with us. Thank you for celebrating every accomplishment and milestone with us. We cannot say thank you and we love you enough.
Devin, Teshia, Lenox,
Hanna and Leif Nosterud Tweet