The worst day ever at CH - admitted into hospital

Where do I start, what a day! We drove into hospital for two hours during peak hour traffic to arrive by 9am. When we got there, I saw Dylan’s history sitting on the desk at the admissions office, so I was relieved that they were expecting us. The admission clerk rang the 6th floor who transferred the call to our nurse co-ordinator, who told us to go and have breakfast as she needed to call the doctor to confirm something. I didn’t even have money for breakfast! So I decided to go and park ourselves in the day chemo treatment room until we were seen. At 9:45am the nurse co-ordinator came and told us that the doctor had consulted with Sloan Kettering in New York, who suggested that we try another dose of Cisplatin and Etoposide before we resort to Topo/Cyclo. Dylan's doctor was not in today so I could not directly speak with him about what the plan will be from here or if Sloan Kettering were considering him as a patient. I was told that Dylan needed a 3 hour pre hydration plus Mannitol before the chemo could start and that we would commence in day chemo as they had no beds (surprise, surprise). So we waited, and waited and waited until finally at 2pm they hooked him up to the pre hydration fluids. That’s 5 hours past admission time! I get so angry with them, making us get up early and sit through traffic only to spend another 5 hours sitting, staring at a wall, until we commence any treatment, knowing we could have slept in and waited until peak hour was over. As we sat in day chemo we watched another girl about the same age as Dylan having start her chemo at 11am. We then saw her get taken to the 6th floor to her bed by 3pm! Yet they told us there is no beds on the 6th. Dylan asks, “where’s my bed? why have I not got a bed?” I can’t understand why children so sick, with such serious medical treatment cannot even get a bed in this hospital, and are made to wait a ridiculous amount of time before they get seen to. By 6pm we were the only patients left in day chemo, and the nurse told me they have a bed for us on the 5th floor, the general medical ward. I asked the nurse, is it an isolation room and she said no. I explained to her that I spend my whole time protecting him from potential risk of infection from other children and yet you are going to send him to a ward with children with contagious conditions such as chicken pox, bronchitis and measles! She assured me that the other children Dylan would share with would not be contagious. I demanded to take it further as I do not want to take the risk, and did not want it on my conscious if he got sick because I did not attempt to keep him out of that ward. She then got an oncologist to see me who assured me that Dylan was only going to be with one other child who did not have a contagious condition and that Dylan was at no more risk than being in the cancer ward. She told me that my concerns were not warranted and that the hospital knows best. My argument was that he would be on the same ward with contagious children and that’s too close for comfort. The doctor told me that he is not neutropenic now so would be at no more risk than us, but I argued that he will be neutropenic in a week and if he caught something now, he could get sick in a week when he is neutropenic. She said that’s all they could offer and that because Dylan had started chemo we had no option but to stay. We went to the 5th floor very reluctantly and were put in with a little girl. After 20 minutes her mum pointed out to the nurse some suspicious spots on her daughters face! I had not mentioned to her about our fears but thank god her mum was switched on enough to realize the potential risk to a cancer patient. The nurses acted quickly to remove Dylan from the room. We were put into the room next door and the little boy in there was being transferred to the cardiac ward anyway, so in the end we got a room to ourselves. I just burst into tears, all the stress of the day was all too much. Not only do we as parents have to deal with the fact that our children have a life threatening illness, but we also have to endure the long agonizing hospital wait for a bed and fret over what treatments are happening next. I sit here knowing that my child’s life is in their hands, yet he cannot even get onto the cancer ward! It is all so stressful to try and cope with. Dylan is only 6 years old and on every drive into hospital he says “I hope they find me a bed mummy” That makes me so upset, that he should even have to worry about that, it’s just not right. Because Dylan's chemo started so late in the day, he will be have to stay until late Saturday night or Sunday morning meaning he will miss out on “Santa’s Kingdom” on Saturday, which he had wanted to go to. I also looked back on his past experience with this chemo and he was extremely sick when he had this last time. He needed pain relieve for stomach ulceration, he had constant nausea and vomiting for 2 weeks, his gastric peg got infected and he needed 2 blood and platelet transfusions not to mention antibiotics. Cisplatin also affects the hearing and Tim and I have noticed Dylan’s hearing has worsened just from the last round he had, so this round will most likely do more damage to his hearing. Today’s chemo will make it Dylan’s 5th round of chemo since diagnosis. This is going to be a very hard next 3 weeks that’s for sure. So much for xmas and new year’s!