Friday, October 15, 2004

The day our lives changed forever

Welcome to our Journal. As this is our first entry, I we will start with some past history on Dylan and his cancer. Dylan started prep this year and was a perfectly healthy and normal child, or so it seemed. He ate me out of house and home and loved trying new food. His ambition is to be a chef one day. Dylan first displayed signs of illness on 21st May 2004 when we took him to our family doctor for stomach pain, vomited through the night and a fever. She examined him and he had a red throat, so she said it was most likely a virus or a stomach bug. The next day he was fine and had no signs of illness until the 17th June 2004. He had stomach and neck pain, so I took him to the local doctor thinking it may be his appendix. The doctor saw him straight away and ruled our appendix but was concerned about the neck pain being meningitis. He referred us to the children’s Hospital emergency room. At the CH they did a urine test and gave him panadol and told us it was a virus and to go home and persist with Panadol. He become well again until 24th June and we kept him home from school. He displayed on and off stomach pain and we assumed it could be bowel pain, growing pains or an attention thing as he seemed well most of the time, ate well and playing as usual. On 8th July we took Dylan to the local hospital with the stomach pain increasing intensity and more frequently. They did some blood tests that showed something was going on and admitted him for an MRI the following day. Dylan was sedated on 9th July for the MRI and during this sedation he held my hand and said “I love you mum, I love you dad, I love Nana and Cain. You are the best family I have ever had, you’re the best mum I ever had and I will never forget you” I thought it was a strange thing to speak in past tense but put it down to the sedation. I now know that he knew just how sick he was and those words sent shivers down my spine on the day we got the final diagnosis. The MRI came back with a diagnosis of Osteomeylitis, a bone infection in the neck. The doctors said that it was defiantly Osteomeylitis and he would need up to two weeks of IV antibiotics. When I mentioned the stomach pain, I was told that it was a secondary symptom and not to worry about it. On the 13 July Dylan had an anesthetic for a Long Line (pick line) to put into his arm as the antibiotics kept collapsing his veins and has had to have a new catheters inserted each day and it caused him a lot of distress. The stomach pain continued and the antibiotics decreased his appetite. He weighed 17kg. On 18th July Dylan was discharged from hospital, despite the stomach pain. We were told to give him Panadol or Nurofen for the pain and given antibiotics (Fluclox) to continue for four weeks and an iron supplement for his anemia. They told us that he was anemic due to poor diet, yet he was a great eater and had a great diet. On 21st July Stomach pain became unbearable so we took Dylan back to the emergency room, Bloods were taken and x-rays done. Diagnosis was constipation! I told doctors that I would know if my son was constipated for four weeks! Regardless he was given two enemas and admitted again. As long line was removed at last discharge, he has had another IV inserted. More bloods were taken the following day, showing abnormal things still going on in his body so the doctors decided to do an abdominal ultrasound. The ultrasound revealed a very large lump between spleen and spine. That evening by ambulance, we were transferred to the Children’s Hospital for further tests. They have told us to expect the worse…Cancer. On 23rd July Dylan had another anesthetic for a CT scan and a bone marrow aspirate to determine what cancer we were dealing with. The doctors told us that no results would be told to us until Monday afternoon, once the bone scan was done. This was the longest weekend of our lives. Tim and I both slept by Dylan’s bedside on a single fold out bed. The Oncologist told us that he believed that the mass in his stomach was the same tissue as in his neck. We knew then that it was definitely cancer. On the 26th July our lives changed forever. Dylan had an ECHO and ECG scan on his heart and an audio test (hearing), and a bone scan done today. We were given his history to take up to these tests and I read them while we waited to be seen. I saw “pre chemotherapy assessment” written on the front entry. I got a lump in my throat and turned to Tim and said “There’s our answer”. It also said a word I could barely read something…blastoma stage 4. Later that evening the Oncologist and a social worker came in and they took us to a private room along with Tim’s parents. Tim and I held each others hands for the news. I wasn’t as prepared as I thought, we assumed it was cancer in the stomach and neck and that he would have it removed followed by some chemotherapy but what he told us ripped my heart out.

Dylan has a rare cancer called Neuroblastoma and it is at it’s most advanced stage (stage IV) It is a very fast growing and aggressive cancer that starts on the adrenal gland and has spread to all his major organs so it is in- operable at this stage. He has it in both legs, both arms, his pelvis, his ribs, multiple tumours up his spine extending to the top of his skull and it’s also in his bone marrow. Tim and I just cried and cried, we had no idea how bad it was going to be. The doctor said that it was so advanced that he wants to start chemotherapy straight away and that we can’t wait for the other tests that he had ordered to be done. He will have a “Hickman line” inserted into his chest that will remain in there for all of his treatment. I asked how long has he had this cancer for and he said that it was so fast growing and aggressive that he may have only had it a few months. The social worker spoke with us but everything she said just drifted off into the distance, like I was in a bubble and couldn’t hear what she was saying. To this day Dylan has had 3 rounds of Chemotherapy including: Vincristine, Doxorubicin, Cyclophosphamide, Cisplatin & Etoposide. He has had a gastric peg put into his stomach as his weight went down to 14.8kg. We now feed him by a pump each evening to try and maintain his weight. We got his weight back up to 16.5kg. He is on Magnesium and potassium and a lot of other assorted drugs depending on his condition.