On May 21, 2012, at 17 months old Caleb went to his Laporte pediatrician for blood work for unexplained bruising. Later that night we got a call from Caleb’s pediatrician saying go to South Bend Memorial oncology/hematology for another blood draw.
That night in a conference room they told us the horrific news…Caleb has Leukemia. Since it was so late at night by the time all was said and done in the morning we were rushed, by ambulance, to Riley Children Hospital.
That morning at Riley Caleb underwent a bone marrow biopsy and spinal tap to see what type of leukemia, see if it spread to spinal column and brain. Luckily they found NO leukemia cells in spinal fluid!!! And he was diagnosed with Acute Lymphoblastic Leukemia. He was put on average risk treatment plan (low, average, and high risks plans) because he was under 2, and amount of leukemic cells found in blood samples.
We stayed at Riley for 6 days. In those 6 days Caleb had surgery for port placement, started chemo, had another spinal tap, another bone marrow biopsy, and had blood and platelets transfusions. Saying it was a rough week was an understatement.
Seth and I then had to make a big decision…Stay at Riley for treatments (treatments over 3 years for boys) or change to South Bend Memorial. Riley hospital was absolutely wonderful but we didn’t feel comfortable being 2 1/2 hours away from our doctor. So we met up with the oncologist in South Bend Memorial hospital and loved her. We feel a lot more comfortable being 45 minutes away rather than 2 1/2 hours away.
Leukemia treatment is unusual because it’s in blood and blood travels everywhere. There are no stages. There are 6 phases of treatment: Induction, consolidation, intermin maintenance 1, delayed intensification, interim maintenance 2, and then maintenance. Complete treatment for a boy is 3 years, 3 months and for girls 2 years. Theses phases are all different and involve harsh IV chemo, oral chemo, spinal taps, bone marrow biopsy, steroids, and injections.
Caleb went back to Riley at the end of month 1 for another bone marrow biopsy. My Dr. likes the same set of eyes looking at the samples. Caleb also still gets his daily oral chemo from Riley. And if anything should happen with the port Riley will also be the one to fix/replace. And when we have completed treatment on July 31, 2015 Caleb will go back to Riley to get port removed.
Caleb was in remission early on… June 1, 2012. Although in remission leukemia has the tendency to come back so the treatment is a long process to keep it away for good. Caleb is in the final phase of treatment, the maintenance phase. He now receives IV chemo every 4 weeks, spinal tap every 12 week, oral chemo daily, steroids twice a day for a week every month, and antibiotic on weekends.
Caleb had a rough year last year. We were at the hospital at least 1 time a week. He missed EVERY holiday. Along with harsh chemicals pumped into Caleb’s body he also had numerous blood, platelets, and IVIG transfusions. Caleb is a fighter and now his hair came back, he has more energy, and looks great. What more could we ask for. Bring on July 31, 2015!