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Apr 4, 2016
Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most.
Julian, who goes by the nickname Juju, turned 3 at the end of November 2015. He was diagnosed with precursor-B cell Acute Lymphoblastic Leukemia on December 23rd, 2015. Julian was admitted to Gundersen Lutheran Pediatric ICU in La Crosse that evening. On Christmas Eve, Julian underwent minor surgery to get a chest port put in, received a lumbar puncture to administer chemotherapy into his spinal fluid, as well as check the spinal fluid for leukemia cells and then began his IV chemotherapy through his port. He also received a blood transfusion and a platelet transfusion. Juju was able to move from Peds ICU to the general Peds floor on Christmas Eve, where he stayed until December 28th, when we were able to go home. Our first clinic visit for chemotherapy was on December 31st. When Juju had his bone marrow aspiration on January 28th to see how his bone marrow was responding to treatment, the testing determined he had less than .01% detectable leukemia cells, which can technically be considered as in remission. Julian has a 3 year treatment plan to hopefully eradicate this horrible disease for good. During the past 3 months, we have gone to the clinic for chemotherapy at least once a week. Julian has received 9 different chemo medications, has had 7 lumbar punctures, 1 bone marrow aspiration, 2 platelet transfusions and 3 blood transfusions so far.
Acute Lymphoblastic Leukemia, or ALL, is often called 'cancer of the blood.' It affects the blood-forming cells that normally make a type of white blood cell called a lymphocyte. This lymphocyte gets a mutation that transforms it into a leukemia cell. The leukemia cells multiply uncontrollably, crowding out healthy cells in the bone marrow. We are often asked how we knew Julian was sick or what the signs and symptoms were at diagnosis. Because of this crowding of cells, the bone marrow was unable to produce the normal amount of red blood cells/hemoglobin, platelets and normal/healthy white blood cells.The low amount of these cells caused Julian to have many outward symptoms that ultimately led to his diagnosis. He developed pneumonia during the month prior to his diagnosis as a result of low healthy white blood cells. He was short of breath and very pale, related to the pneumonia, but also the red blood cells/hemoglobin. He began to get petechiae and unexplained bruising all over his body, which was a result of low platelets.
I will try to post updates throughout his treatment. He is such a strong little boy, who doesn't fully understand what's happening to him. He has such a zest for life and we remain hopeful and positive that he will conquer this horrible time during his life.
I would like to thank everyone who has helped our family and has been so generous with gifts, money, gift cards, love, hugs and encouragement during this time! It has been so overwhelming these past few months and the support has helped so much! We could never thank everyone enough for everything that has been done for us and the continued support we receive.