Millie had her first appointment with our local oncology team yesterday. We were asked loads of questions about our experience in Jacksonville. We are the only ones from this area to have been sent for proton and many hadn't even heard of it before we went. I do wander whether there will be any other children from here going in the future. Part of me hopes so because it means that child will be getting the best treatment but I wouldn't wish such an ordeal on my worst enemies. Earlier this year the British government put aside more money to be able to send more children for proton therapy in Jacksonville. So I guess the chances are high. We have offered to help in any way we can.
Millie did well at the check up. She has grown at least 2cm in height since we left and is looking remarkably well. Everyone was amazed at how well she seems to be doing. Her ear has healed completely. Her head is still a bit dry but apart from the baldness she looks as healthy as any other 2 year old. However, she is shattered - she put herself back to bed at 9 this morning and slept for nearly 3 hours. She was asleep at her normal time tonight as well. I get woken by giggling girls each morning which is lovely. As long as she doesn't climb the ladder up to her sister's bed again! A few days ago she climbed up by herself and her sister helped her down. I was still sleeping and her big sister told me about it later in such a matter of fact way - aargghhh! She is still not that good at such things and the last thing we need is a fall, from either of them. I have told them both that Millie is not allowed up unless there is an adult present. Since then our eldest has come down to Millie each morning before Millie has wanted up. She is a pretty special big sister!
I had 2 immediate concerns at the check up yesterday. The first one was to get Millie's wigglies removed as soon as possible. The second to make sure she got a similar amount of physical and occupational therapy as quickly as possible. I was rung this morning by the hospital - Millie will be having her line out on Wednesday!!! We have to be in for 8am and should be out by lunchtime. She will probably be the first on the list as she is likely to be the youngest. It is fantastic news, I can't wait for her to be able to have a normal bath and summer with her sister. It is hopefully being done in time for her to heal before our caravan holiday by the sea. Not that it will be as warm as St Augustine but I know Millie will still love it. I am still waiting to hear about PT and OT but the responses have been positive. So I am hopeful.
We have another check up in 2 weeks time where we will discuss Millie's medicines. She, in theory, no longer needs to be on 2 anti-seizure drugs but taking her off one needs to be a long and carefully monitored process. We have an MRI in about 6 weeks time and every 12 weeks after that for the next 2 years at least. There will also be a lot of monitoring for side effects of the proton, including vision and hearing tests, tests for growth hormones and checks for any neuro-cognitive damage in years to come. We still have a long journey ahead of us. And considering the last few months I really can't believe how positive it all seems at the moment. One step at a time.
When you have Little Feet and it's a Long Walk, you take One Step At A Time.
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