I'm not finished with this post but I had to get it posted so I don't get the dates out of order and fall further behind than I already have ... feel free to skip over this post, it's more for our memory of how this all began. Check back when you can... I hope to keep it updated pretty frequently!
(This really doesn't do justice as to how big his bump really got)
My sweet boy started getting sick about a month ago. We found a bump on his left cheek and around the same time, he started complaining about pain in his legs. We thought his cheek would resolve itself and his legs, we blamed on growing pains. We took him to his pediatrician who admitted him to the hospital for several MANY tests. We then began working with an infectious disease doctor, an ENT doctor and a physical therapist. They did all sorts of tests and check-ups and adjustments ... nothing. Oakley only got worse... the bump in his cheek got bigger and the pain in his legs became unbearable. He went from walking, to crawling, to dragging his legs behind him, to no movement. We knew we needed to figure out what was wrong with our little boy so we packed him up and headed to Idaho for a second opinion. One doctor suggested we skip all the testing and take him straight down to Primary Children's Medical Center. After much debating, we took his advice and headed down. What a great choice, if only we had made it three weeks sooner!
June 23-26: We took Oakley to the Emergency Room at PCMC. The ER doc asked a lot of questions, ordered a few tests and admitted him to the pediatric unit. Spent several mornings listening to him scream for cheetos, mashed potatoes and hot pretzels because he had an NPO order (nothing by mouth). They wanted him to be ready whenever they got around to sedating him for the different tests ordered. X-ray came back showing several tumors down his spine which alarmed the doctors and soon the Oncology doctors were involved. A parent's worst nightmare! They decided to do a biopsy of the tumor in his cheek, did I mention that he had a smaller tumor that crept up right behind his ear. They decided to remove this smaller tumor for testing because the bigger tumor was intertwined with all the facial nerves, good choice. So, Friday morning he was put under and underwent his first surgery.
It was a success and we were then transferred to the Oncology unit or ICS (Immunocompromised Services). The next morning, they became concerned about the larger tumor they had found on his lower spine. It was wrapped around the spine and pressing on his spinal cord. So, off we went for surgery #2 Saturday afternoon. Another success, or so we look at it as being. They were able to relieve the pressure from this tumor. Oakley wasn't able to move a whole lot after this surgery due to the pain. He quit moving his ankles and feet which concerned the Dr.'s. They said that trauma like his to the spinal cord could take up to 6 weeks to recover from. They worried they might have gotten in there too late and the damage was done. We sure hope this isn't the case. He's a fighter and we're hoping he regains this ability in the future.
June 27-29: And the waiting begins... ... ... We were told that they should have some answers by Monday morning. David cleared his schedule for another day and the waiting game began. Monday came and went. David cleared another day of patients and we were on to Tuesday. No answers in the morning...more waiting...no answers by early afternoon...more waiting and then 5:00 rolled around... The doctors took us to another room where they broke the news to us. Our little baby had Rhabdomyosarcoma. A rare childhood cancer of the soft muscle tissue. In Oakley's case, this disease had spread all over. They found several tumors down his spine, a couple in his cheek, a couple on the back side of his ribs, both hips, his left femur and in his bone marrow. To the Dr.'s there was still hope but it was going to be a long journey because of all the places it had been found. I of course had to ask... and they said they had seen kids last only a year and others up to 3 years. We were devastated, scared, hurt, angry and so much more.
Since that awful day, we have seen miracle after miracle take place. We have been blessed with so many people who care and have prayed on Oakley's and our behalf. We can't focus on how long we might have this precious little boy with us but we have to focus on the time we have with him right now! He's such a special little boy who's definitely a fighter. For this, he will be blessed! He's not only loved & cared for by his parents, brother and sister very much but he has his Savior looking out for him. We know everything will work out for the best! :)