The next stage has begun

We had another appointment at our local hospital today, that makes it four in the last two weeks - 2 oncology clinics, 1 operation and 1 physical therapy evaluation. I have to be honest it is beginning to cost a minor fortune paying for car parking and lunch each time. And this is just the start of numerous visits. Will have to look into options for claiming expenses back so that other things can still be afforded.

Today's appointment was at the oncology clinic. Millie gets weighed and measured at each visit - she is getting used to it and today got through it with a smile and little resistance! She has put on about half a kilo in 2 weeks and is now almost 95cm tall, making her above average height as expected. It has been difficult to assess her height over the last few months because she has not been able to stand straight against a wall. Everyone has been commenting on how big she is getting but on paper she isn't much bigger than she was 5 months ago. I think it is more to do with the fact that she is standing taller and looking much healthier and happier. She is no longer in pain, feeling insecure or generally crap, she almost glows with happiness and joy. She was on top form today and had me smiling at her antics for most of the visit. She even charmed 2 elderly ladies who gave her some money to spend on a treat! It is wonderful to see her enjoying life to the full but reality has kicked in a few times this week (including twice today) and it is tough to face.

Our oncology doctor, Dr Paul, is happy that she is doing well but wishes to start with endocrinology tests to get a baseline for future monitoring. Millie's pituitary gland was not exposed to much radiation which is good as that is where our hormones are created. However, her hypothalamus was heavily exposed and that is considered the hormone control centre. Dr Paul wants to carry out one of the easier tests that checks Millie's stress hormones. It is a pretty simple test that will involve taking blood from a canular in Millie's hand, adding a drug that the body responds to by creating its stress hormones and then taking more blood. It will take a couple of hours. My first thought was that Millie is NOT going to be happy about the canular, which will cause her stress! The appointment is on Friday 9th sept and will be the first of many tests that Millie will have to endure for the rest of her life.

A few days ago we received a letter from Dr Danny summarising the treatment that Millie had and setting out tumour monitoring recommendations and surveillance recommendations for treatment side effects. It is obviously a letter written for others involved in Millie's treatment and makes pretty scary reading. I have been avoiding reading it until today, I just haven't had the strength to cope with the realities of our situation. In summary:

* An MRI scan 6-8 weeks post treatment to establish a new baseline. The MRI should be repeated approximately three to four times a year for the first three years and then gradually spread out thereafter (for life).
* 14% of the right temporal lobe received 20 Gy or higher and 81% of the remaining left temporal lobe received 20 Gy or higher. Neurocognitive testing is recommended within the next 6 months to establish a baseline. In the absence of any concerning findings this should be repeated at a minimum of every 2-3 years until school is finished.
* The pituitary gland received a mean dose of 0.3 Gy but the hypothalamus received a mean dose of 34 Gy. Recommendations are for regular neuroendocrine screening at 6-12 month intervals at least through puberty but most likely for life. Particular attention to be paid to growth hormones.
* The optic nerves and chiasm received almost no radiation. Only recommends regular opthalmology and visual acuity exams.
* The cochlea received very little or no radiation.
* 87% of the scalp received 30 Gy or higher. The estimate is that Millie will have a least a patch of permanent alopecia.

I don't, yet, understand what all this means. However, I'm sure we will get to know in due course. I have just had a brief look up of temporal lobes and decided it was just too scary at the moment. We'll take it one step at a time. And enjoy each day that we have as a family.

On top of all this Millie will need regular physical and occupational therapy for the foreseeable future. We had a physical therapy assessment at the end of last week. It was the same therapist, Michelle, that we saw briefly just before we left for America. Yet, again, Millie has progressed since anyone wrote a report about her! Michelle has referred us to the local child development centre for physical therapy as she is unable to provide Millie with what she needs given her resources. However, we will be doing hydro therapy with her for a few weeks at least. We start in September. I think it will be quite fun and will also give Millie water confidence which will be great. It will also be good for her to build up her strength and therefore improve her balance and coordination.

Yesterday we met the occupational therapist, also from the child development centre. She came over for a brief visit to check Millie out and get the ball rolling. She was very positive and will be working closely with the physical therapist. They will also be happy to talk and work with the staff at Millie's nursery. I don't know anything about this centre, I had never heard of it before last week, but I am impressed so far. The only problem is going to be getting Millie there and juggling a job. It's easier to get to than the hospital, I think, just not that near us. Looks like we will be doing a lot of car miles over the next few years.

On a positive note. I had a long chat with the manager of our local nursery about Millie settling back in again. She was very supportive about Millie going back and is prepared to for what they can for her to give her the best opportunities for her development. She is hoping to get additional support so that someone is always able to keep an eye on Millie at times of risk, i.e. when they are outside and running about. We stayed for about half an hour and Millie played with her sister, the other children and another member of staff that she already knows. She did keep checking I was still there but she was having a really fun time. She will settle in fine this time and will have a great time, just like her sister. They can do more for her development than I can. It is the best place and we are so lucky it is on our doorstep.

We are off on holiday on Friday. Thank you to the Christian Lewis Trust who have a caravan in South Wales that we are staying in for a few days. I contacted them before we went to America but because everything happened so quickly I only got the forms to them after we got home. They were prepared to keep the holiday open for us until we got home. We are all looking forward to a few days of much needed family holiday. We will then be staying with some old Uni friends for a few days and hope to catch up with a lot of old friends and their families.