written by Anthony (Dad)
March 2019~ Over the last few months, we noticed that Ryan has not been himself, including losing a few pounds. He battled 3 cases of strep throat in December and January and ran a fever for 5 days before Christmas with no other symptoms. After that, he seemed tired too often and too early in the day. After seeing his pediatrician, it was suggested to have blood tests to check for any issues. After the testing, it was believed he had anemia or a low iron count. We started him on a low dose, slow release iron supplement, which seemed to be working. Ryan seemed himself again. He had more energy, was eating well and was getting tired when he should have been, at the end of the day. But on March 8, we noticed Ryan’s heart rapidly beating after horse playing with his sister Abby. After checking his pulse, which was high, we let him relax and it seemed to calm down, but still concerned us. We watched him all weekend and decided to have his pediatrician check him again on Monday thinking maybe the iron pills were too strong. At the exam, his BP and pulse were elevated and the doctor was focused on his abdomen. The doctor suggested we take him to Robert Wood Johnson in New Brunswick for a full exam.
Ryan’s story is now just starting.
Upon arriving at the ER, Ryan was given an IV and put on a heart monitor, which was showing he was in tachycardia. Blood tests were ordered and Lauren and I sat and waited to find out what was wrong with our little man. Meanwhile, Ryan just wanted to go home and eat dinner. Typical Ryan!
3 hours later, the doctor and nurses asked us to come into another room to talk about the test results. Nothing good comes from leaving the patient to talk. Minutes later, words no parent, patient or anyone would want to hear, were said. The doctor informed us the blood tests showed that Ryan has Acute Lymphoblastic Leukemia. Otherwise known as Leukemia. Otherwise known as…Cancer.
Ryan was immediately admitted into the Bristol-Myers Squibb Children’s Hospital, Hematology Oncology Unit on Monday, March 11th, the day that has forever changed his life and our family’s lives.
Ryan immediately received a blood transfusion along with numerous medications to begin his fight. On Wednesday, Ryan went into surgery to have a spinal tap; draw spinal fluid for testing as well as fill the spine with chemo. He also had his bone marrow tested as well as having a port put in, which is a line that leads directly to his heart in which medications can be given. Over this past weekend, Ryan received his first round of chemo along with a second blood transfusion and 2 platelet transfusions.
Ryan’s fight is on to battle this and we are happy with the results so far. His spinal tap came back with no signs of cancer in his spine. He is responding well to the chemo with no side effects so far. He has a long road ahead of him but he also has a team of 7 doctors working daily to provide him with the best treatments possible. He also has the love and support from his family; Mommy, Daddy, big sister Abby, Grammy, Pop, Grandma and his Godparents Jessica and John along with so many friends.
The hope and outlook is that Ryan will be in the hospital for possibly 4 weeks with follow-up care afterwards for the following 2 years. We know that there will be bumps in the road, but doctors feel Ryan can and will make a full recovery. We are happy for that and look forward to the day that we can say that Ryan is in full remission.
Update April 19, 2019
Ryan has been declared in remission. With that, Ryan will still continue to undergo treatments over the next 2 years to help maintain this state and prevent it from returning. We can not express how happy we are hearing this just 38 days after getting news no one would ever want.
Ryan will continue to receive chemo treatments, weekly checks into the clinic and testing of his blood levels. There will be ups and downs with his blood counts. When his counts are good, Ryan will be seen outside, enjoying everything it has to offer. When they are down, we will enjoy our home and keep him protected to get better. Ryan is in good spirits, eating well, playing with all his favorite toys and waiting for the Easter Bunny to arrive.
Update July 2019
Medically, Ryan is doing very well. Still responding as expected to the chemo. Today began the next phase (the first of 8 cycles, each cycle 21 days) with the first day being intense chemo and steroids and oral chemo, the second week only oral chemo, and the third week only one chemo, but a rough one. We will be able to get into more of a routine, and get back to a more “normal” life…our new normal.