Poor Daisy Doodles didn’t have a great start to her birthday week. I think she had a tummy bug. I say I think because when you have child that projectile vomits for fun, it’s difficult to know when the vomits are induced by something more sinister. She was sick in her bed in the middle of the night. That’s a relatively new one on us. If she is sick in the bed it is usually not long after she’s had her last feed and been put to bed. This was about 5 hours after she was put to bed and it properly stank. She then didn’t keep any of her feeds down in the morning so I abandoned trying to feed her and connected her up to a pump of rehydration sachets. That seemed to do the trick. She was right as rain again on Tuesday.
Sadly she missed nursery because of the 48 hour rule. I am a stickler for this rule. You never know who might be living in a house with people with weakened immune systems. Passing on a tummy bug to someone like that can result in a pretty serious illness. I think back to when Daisy was on chemo. I’d have hated her to have caught something and for it to have been life threatening for her, just because someone sent a child back to nursery/school before the 48 hour window. To be fair, we didn’t let anyone near her when she was on chemo so her chances of catching anything were pretty slim. She was four months old before she met anyone other than me, The Tidy Tyrant, Glamorous Grammy, Patient Pops, Uncle Quiet, Auntie Peaceful and all the Drs and nurses that looked after her.
Anyway onto happier times. She had an awesome birthday. The Big Three. I can hardly believe it. I’m not sure she quite understood what was going on, but numerous renditions (terrible renditions I might add) of ‘Happy Birthday to you’ certainly kept her smiling all day long. Thankfully her hearing impairment means she can’t quite appreciate what a bad singer I am. Once again she has been spoiled by the generosity of family and friends. She loved her birthday meal out at Pizza Express and even had a little taste of the delicious gluten and dairy free birthday cake that Elaine and Lisa (from the Bluebird Tearoom) made her. Thanks so much you two we are very touched by your kind, kind gesture. Once we were home we blended it up with some milk and put it down her tube. It was a success; by that I mean it didn’t come back up!
In my recent blog I was talking about Daisy starting to understand more of the world around her. We have noticed an amazing thing. Every time we drive past the end of Glamorous Grammy’s road she starts being really vocal as if she is trying to tell us something. I actually think she recognises it. It has happened too many times to be a coincidence. She even did it the other day when Glamorous Grammy was in the car. Go Daisy! My mum says she is probably shouting, ‘take me to Grammy’s, take me to Grammy’s, she plays with me so much more than you do!’
I should warn you that the rest of this blog may induce tears. So if you are of a sensitive disposition then you should stop reading here while I was on that happy note.
This morning a super emotional thing happened. I took Huxley for an eye check up appointment and the consultant that he was seeing was the Doctor that first spotted Daisy’s eye tumour when she was only 11 days old. I can’t quite find the words to express how brilliant it was to be able to thank him. He was very humble and I’m sure he thought he was only doing his job, but for me, spotting that tumour so early on has not only saved Daisy’s eye from being enucleated but also given her so much more sight than she could have had. I am forever grateful to the Drs and nurses at Yorkhill Hospital who were so thorough with their checks that enabled them to find it so early on. In most cases, retinoblastoma isn’t caught until children are about one and by then the tumour(s) can be so big they can’t even save the child’s eye.
It took me back to that day nearly three years ago. They had taken Daisy to theatre for the Ear, Nose and Throat Doctors to examine her throat. They had prepped me to expect that there might be a constriction in her throat or something wrong with her voice box that was preventing her from combining swallowing and breathing properly. I had also agreed that they could do a routine eye check up while she was under anaesthetic. Apparently an eye check was something they did for all the babies in neonatal but it was much easier to do if they were under anaesthetic. Nothing could have prepared me for what came. Once she was back from theatre two Doctors came and asked when Daisy’s dad would be arriving (he was at work). They were keen that we wait on him but I didn’t know quite when he would manage to get there and the Doctors were going home for the evening soon after. I told them it would be fine to speak to me on my own and I would pass the info on to him. They took me into a private room. My heart started thudding at this point. You don’t get taken into a private room in a hospital for anything other than bad news. It was then that they told me they thought she had an eye tumour and that it was most certainly cancerous. All I heard was cancer. They then started telling me all the statistics and what would happen but all that was going round and round in my head was the word cancer. I had heard about cancer. No good ever came of cancer. In fact I had already lost a few friends to cancer. I stayed strong and didn’t cry. I guess because I didn’t want to cry in front of these people that I didn’t know. As soon as I was out of the room, I called The Tidy Tyrant and told him to hurry up. As soon as he arrived I broke down. How could my beautiful tiny little baby girl have cancer at 11 days old? That night was hands down the very very worst night of my life. I felt like my world had come crashing down. The next day, when my brain had stopped spinning, we went back and sat down with these Doctors again. This time I was able to hear all of what they had to say and that the prognosis for retinoblastoma, when caught early, is very good. We certainly had that on our side.
So you see that is why, after three years, it was so utterly lovely to meet this Doctor again. All the raw emotion of that day is long gone and Daisy’s journey with retinoblastoma has so far been very successful. Our fingers will remain crossed that this is one hurdle that we are over but you never can be too sure.
As I have been writing this I have read an update from a friend who we have met through the evil that is retinoblastoma. Their little lady has already lost one eye. That was heartbreaking enough. Now the other eye has worsened and she is going to have to endure another 6 rounds of intensive chemo and even more chemo injected into her eye. And they are not even sure if this will save her eye. It is a stark reminder of what this disease can do. Tonight my thoughts are with them and I have absolutely everything crossed for the best possible outcome.