Twin Diagnosis: A family’s story of cancer survival

Twins have a special bond, and Jakob and Channing Nielson are no exception. As inseparable best friends, they share a love of playing and wrestling together, and as Wisconsin-raised 10 year olds, they also share a love for the Badgers. But what the family never dreamed they would share was a leukemia diagnosis.

I recently had the opportunity to meet Jakob and Channing along with their extraordinary family after joining the Leukemia and Lymphoma Society’s Man and Woman of the Year fundraising campaign. After speaking with the twins and their mom Alyssa, I knew I had to share their story. 

Jakob, Kindt, Alyssa and Channing Nielson        Photo credit: The Leukemia and Lymphoma Society 

Channing was just three and a half years old when he became very sick with a high fever, rapid breathing and rapid heart rate. After being treated for strep throat, he continued to feel worse. Further tests showed that he had an abnormally low white blood cell count and anemia which lead doctors to schedule a bone marrow biopsy. The diagnosis: leukemia. 

When she heard leukemia, Alyssa immediately thought Channing was going to die, but the doctors quickly reassured the family that Acute Lymphoblastic Leukemia has a 90 percent survival rate.  Channing had six months of invasive chemotherapy consisting of weekly visits to the hospital along with six three-to-four-day inpatient stays with high-dose IV chemotherapy. After he finished that phase of treatment, Channing entered the maintenance phase which lasted two years and consisted of monthly chemotherapy treatments. Channing fully finished treatments after almost three years at age six. 

Once Channing moved to monthly appointments, the family started to find their new normal. Both boys started 4K and Alyssa and her husband Kindt welcomed their fourth child. The family was finally healing and life was focused on school and everything that comes with a new baby. However, less than nine months after Channing finished treatments, life at the Nielson house would once again be flipped upside down. 

Jakob started having pain and symptoms that worried his parents. He had multiple long-lasting bloody noses in less than 24 hours and became pale and lethargic. Tests showed Jakob’s platelets were low, and he had an enlarged spleen and bone pain. Because Channing and Jakob are identical twins, Alyssa knew there was an increased chance that Jakob could also get leukemia. A bone marrow biopsy was done the following day, but an early blood draw showed cancer cells in his peripheral blood. Jakob, too, had leukemia.

Alyssa said that with Channing’s diagnosis there was fear of the unknown, but with Jakob’s, it was fear of the known. The family knew all too well how long and hard cancer treatments are. They were very familiar with the scary and real side effects that the life-saving poison could have on Jakob, but they also knew how much support they would have from the hospital staff and LLS.  

Jakob’s protocol was different than Channing’s. He had nine months of weekly invasive chemotherapy that included oral chemo, IV chemo and sedations with spinal chemotherapy.  Jakob went through four rounds of at-home IV chemotherapy where his port would be accessed for multiple days, and an in-home health nurse would administer the chemo.  After the nine months of invasive chemotherapy, Jakob moved to the maintenance phase of treatment that lasted about two and a half years. Jakob finished treatment after three years at age 10. 

Alyssa likens going through cancer treatments to going through a hurricane because you’re in a constant state of turmoil solely focused on survival. Support from foundations like LLS, the community and friends were vital in helping the family through the last seven years. Jakob and Channing also saw that by telling their stories they can raise money to help other families who have someone they love going through leukemia or lymphoma. Working with LLS has given them hope that some day there will be better treatments than there are now.

I am honored to be working with LLS on its Man & Woman of the Year fundraising campaign. As a mom, this campaign has touched me on a deep level, and I feel passionately about doing what I can to help families battling these unfair diseases.

If you would like to contribute to this cause, please visit my personal webpage. Just as no child is too small to receive a cancer diagnosis, no amount is too small to help find a cure.

Shari is a Wisconsin native who recently returned to the Madison area. She is a passionate Badgers, Packers and Brewers fan, and she is excited to be surrounded by all things Bucky again! She loves to laugh and make others laugh, especially her son Noah (born 2015) and husband Jason. Shari is a stay-at-home mom to Noah, dogs Ace and Lucky, and cat Alonso. Her secret to successful “zoo keeping” is organization and wine. She holds degrees in Public Communication and Public Relations from UW-Eau Claire where she also worked as a writer before her son was born. She is looking forward to making Madison home again and to all of the adventures to come. Allons-y!



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