On April 16th, 2020, Jedi developed a high fever with no known cause. His fevers continued, along with extreme fatigue for 5 days. We brought him into the clinic for evaluation. He looked good overall so we were to come back in 2 days for bloodwork if his fever continued. At a week his bloodwork showed extremely low platelets and other levels that may indicate leukemia. Two days later his platelets had come up, somewhat, and he looked better. His fever lessened and he improved dramatically over the weekend. Another blood draw revealed that his platelets were close to normal and his liver function tests were better. He was tested for CMV and EBV - both were negative.
Jedi continued to improve and was back to his normal self until May 18th. That day he started complaining of right, lower abdominal pain. We thought maybe he was backed up, then possible appendicitis when fever returned two days later. We brought him back to the clinic, and he had a CT scan done which showed diffuse abdominal lymphadenopathy. His other labs were okay, so we continued to monitor him at home. His fevers went up and down for a few days, but then progressively increased to a max of 105 and he started vomiting. He was admitted to the hospital for observation and to have surgery to take out the swollen lymph node in his abdomen. At this point they had done tons of blood tests for infection (all so far negative), so testing on the tissue was the next step.
On Monday, June 1st, we received news that no parent should ever have to get: Jedi has lymphoma. After more pathology, PET scan and bone marrow biopsy Jedi was diagnosed with Stage 4 Peripheral Mature T-Cell Non-Hodgkins Lymphoma with a Leukemia component.
This cancer is extremely rare in children and, as such, there is no standardized treatment for it. The pediatric hematologist/oncologist has consulted with doctors from various institutions and a plan for treatment was developed.
Currently, we are starting chemotherapy to put Jedi into remission, at which point we will need to proceed with bone marrow transplant to achieve a complete cure.
So here we stand staring at a mountain that extends farther than we can see the right or left. We keep searching for ways to go around this mountain, and avoid it, but there are none. And so we will begin the climb. We know it will be filled with tears, meltdowns, pain, smiles, laughter, hugs and lots of love. Frankly, it already has been full of all of those things but there will be more; lots more. This is a long climb, folks, but we know that the summit is up there. We know that because God promises us that it is. And He is letting down a guide rope for us. A guide rope that He has created made up of His amazing promises, awesome family and friends who love us and medical professionals who care for us. We are going to cling to that rope, and take one step at a time up this mountain!
“I lift up my eyes to the mountains— where does my help come from? My help comes from the Lord, the Maker of heaven and earth. He will not let your foot slip— he who watches over you will not slumber; indeed, he who watches over Israel will neither slumber nor sleep. The Lord watches over you— the Lord is your shade at your right hand; the sun will not harm you by day, nor the moon by night. The Lord will keep you from all harm— he will watch over your life; the Lord will watch over your coming and going both now and forevermore.” Psalm 121:1-8
