Irregular posting

I will continue to post updates as often as I can but they may be quite irregular, like the last couple have been. If you wish to be informed of when I have added a new post then you can take advantage of the 'follow' options on the right hand side of this page. Probably the easiest way to stay informed is to follow by email. Simply type your email in the box and follow the instructions. You will then be sent an email from Feedburner asking you to verify your email address. Once verified you will be sent an email every time I add a post. Hope this helps.

Is this our life now?

It has been a busy couple of weeks. We had a fantastic family holiday in South Wales with a few days in a caravan by the beach and then a few days seeing old friends in Swansea. Thank you to everyone for your hugs and support. It was wonderful to see you all again and just what we needed.

The girls loved being in a caravan. So much so that they were both in tears when we left. Millie even had a tantrum and went and lay down on her bed and refused to leave! It lasted about 20 minutes! We did have a good time and I was sad to leave as well. We needed a holiday, not just for the rest but for the opportunity to spend time together as a family without any interruptions. Time away from the pressures of life. Time to renew family bonds. Time to relax. Time to have fun and laugh. Time to love. No wonder the girls cried.

We got home on the Friday which gave us the weekend to get ready for Monday when we hit normality/reality with a bang. We didn't manage it, I have been so focused on Millie and her treatment that it has been really hard work to think about anything else. My husband went back to work. Our eldest went back to school, now in Year 1 and growing every day. Millie started settling back at her nursery. She had an hour long session and did pretty well. I stayed with her but let the staff work with her as much as possible. Millie kept wanting me to play with her or hug her, which is understandable after all we have been through. She and I have not been apart for about 6 months. No one else has cared for her for any real length of time - not even my husband. They will do an hour or so together but she always wants me eventually. I thought it was going to be hard work settling her back in but she seems to be more than ready for it.

We went in again on the Tuesday and Wednesday morning. On Tuesday she went off with her carer and left me standing talking to one of the other staff. As Millie didn't seem to be worried that I wasn't there I went and hid for an hour! She had a good time and when I asked if she wanted to come back tomorrow she said "Pleeease!!!". So we did and we stayed for almost 2 hours. I sat with her during the music session but then disappeared again and she was absolutely fine. I am not sure how she will react when she knows that I have left the premises but we shall tackle that one next week. In the meantime she has renewed some friendships and is really enjoying the choice and variety of activities. She really needs the stimulation. The nursery can provide so much more then I can. And they are SO supportive - thank you everyone.

As well as settling into nursery Millie had 4 appointments. Two of them were for physiotherapy. On Tuesday we went to the hospital for hydro therapy for the first time. Millie was quite keen to get in the water and was doing well, unfortunately she was splashed in the face which upset her and we spent most of the rest of the session sitting on the side. I did manage to get her pushing a ball in the water with me carrying her towards it but she got splashed a second time and that was it. When I asked her afterwards if she had enjoyed herself she said no because she had been splashed! Our second PT appointment was for an evaluation by her new physical therapist. Claire was very positive and has had a lot of experience with children with a similar condition, which is really nice to know. I think we will get on with Claire. We will be seeing her occasionally in the Child Development Centre. However, our main therapist will be Jenny. We haven't met her yet (next week) but she will be visiting us at home weekly and will be doing both the physical and occupational stuff. It all sounds quite positive. And they are talking about fitting in with my work hours (when I get back) which would be really good.

Our third appointment for the week was with our CLIC social worker, Kim, on Thursday morning. She came to visit and she asked me all sorts of questions so she could complete the forms for Disability Living Allowance. I am so grateful to her for doing this for us. She knows the ins and outs of the form and said she would get it in next week. She will spend 4-5 hours completing it which is just astounding. Something I would never have the time to do. And this is before the government makes it harder to apply!

Friday was our worst day. Millie needed to be in the hospital by half 8 so that she could have the first of many endocrine tests. We had to leave the house before 8am i.e. an hour before our eldest starts school. My husband felt he had to be in work so my parents stepped in and took her to school for us. My mother then came to the hospital to give me much needed support. The purpose of the test was to ensure that Millie's hypothalamus is functioning as it should be. The results will be used as a baseline to compare against future tests. Her hypothalamus was irradiated which means that the production of hormones could be a problem in the future. From what I understand (and I could be wrong - if I am I will post corrections when I find out) testing for changes in growth hormone is very difficult so a test for stress hormones was done instead. This involves taking a blood sample, injecting a drug that has some sort effect on the production of stress hormones and then taking 3 more blood samples at 30 minute intervals. To do this Millie needed a cannula in her hand and that is what turned a simple procedure into a nightmare.

I knew that Millie would need a cannula so I had started preparing her for it by using Duckie and talking about having a wiggly in her hand. I even modified Duckie and put some velcro on his hand so that his wiggly could be moved there. It all seemed to work well and Millie was very happy to put medicine into Duckie's hand wiggly. I also talked to her about having magic cream on her hand to help take the pain away (it is a local anaesthetic). I don't know what it is about the cream but she really did not like it. From the moment she saw the tubes she started screaming. It was a struggle just to get it on and cover it with bandages. They put cream on both hands. We then had to wait for half an hour before they could cannulate. We went to play in the waiting area and she alternated between happy and screaming "take it off". The nurse decided that a registrar was needed to do the cannulation as quickly and calmly as possible, instead of doing it themselves. Looking back I think they worked out that Millie would kick up such a fuss that they would need extra people to hold her still. I sat her on my lap facing me and held her tight, our nurse held her arm still, a play therapist tried to distract but also held a leg. The registrar did the cannulation whilst holding her hand and another nurse handed him everything. We must have been in that room for half an hour. The cream is good but one of its side effects is that the veins tend to disappear, which is what had happened. The registrar decided to use a vein in the underside of Millie's wrist but that had not been numbed so they had to use the numbing spray. Millie definately felt it go in, I was barely able to hold her still and the screams were heart wrenching. She struggled and screamed so much that she used up all her energy and literally fell asleep in my arms during the procedure. She was tired before we got there but it took about half an hour for the heavy breathing and sobs to stop. It isn't the first time she has fallen asleep during cannulation. It is very hard to see her so stressed but once asleep she is relaxed which makes it all a bit easier. We were given a room so that she wasn't disturbed and I cuddled her in my arms. She slept through the first blood sample but they had problems getting blood for the second sample and the process of whatever they do woke her up. Fortunately, they were able to finish quickly and the cannula was removed. I'm not sure she was aware that it had gone in which is a small blessing. She recovered fairly quickly - chocolate buttons and Nanny are a great distraction and reviver! We then went to get her a prawn sandwich and donut as a treat before heading home. Reminiscences of america!

We got through this one but she needs this test, or similar, every 6-12 months. And in 2 weeks she has her first MRI. She will need to be aneasthetised and will also need to be cannulated. Our nurse suggested that we request they use gas and then cannulate her when she is asleep. But we still have to go through the tests and I have absolutely no idea how we are going to manage. We need someone like Kim to help us out. There has to be a better way and I will not rest until we have found it.

The MRI is another cause for concern and not just because of the anxiety about the results. We have been given a time of half 2 in the afternoon and been told she can't have anything to eat after half 7 in the morning. This is 7 hours, the normal is 6 hours. The other day she missed her snack and by half 12 she was sat on the sofa crying at me because she was so hungry. I can't believe that they do not scan young children first thing in the morning so that the hours of starvation are during sleep. By the time she has been scanned and is awake she will not have eaten for over 8 hours - and that is assuming they are not running late. She is 2 and recovering from a serious illness she needs to eat regularly to keep her strength up. It is going to be so stressful for her and me. I have already queried why this is the case and have been told that it is to do with the availability of the anaesthetist and MRI machine. Our ward nurse is going to find out more and see what she can do but the time won't be changed. I have warned them that I will be fighting this 'policy'.

Come on NHS - I know you are strapped for cash and working with limited resources but you can and must do better than this for our children.

Donations page update

A number of you have let me know that the donate button is not working.
I have just created a new button which should now work. If you have further problems let me know.
Thank you for your generosity.

I will post properly soon. We have just had a much-needed real family holiday and normality/reality will hit in full force on Monday. We have a busy week coming up and the first of many monitoring tests on Friday. In the meantime, we are all recovering.

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.

"My wigglies get taken out"

Today Millie's wigglies (access line) were taken out. If we weren't so tired we would be celebrating. It signifies the end of treatment and the beginning of the next phase - recovery and monitoring. We have been waiting for this day for a few weeks and feels like a major milestone. It is also a reminder that without proton treatment she would be at the beginning of a long course of chemotherapy followed by normal radiotherapy. Both would have been a very heavy toll on a small child and have major side effects. Thanks to the 'Power of Proton' we are not doing that. However we still have a long way to go.

She did well today. I have been counting down the days with her and yesterday she knew what was happening today. She was very relaxed about it but also obviously happy that it was going to be done. I was quite surprised that she had the concept of time and something happening in the future. We needed to be in the Day Care Unit of our local hospital for 8'o clock this morning which meant leaving the house at 7:15am which meant getting up at half 6! Millie started to stir at the normal time shortly before 7am and I was dressed and brushing my teeth when she and her sister emerged from the bedroom. Quite a surprise for both of them we are normally fast asleep! I managed to bundle Millie into some clothes within a few minutes and was heading out of the house, without breakfast of course, within 20 minutes. It normally takes that long to get her dressed but I kept reminding her where we were going and she kept up with me. She had a brief wobble when she realised that Daddy wasn't with us but recovered fairly well.

She did really well until the first nurse came to see us and wanted to put some numbing cream on her hand so they could put in a canular. I did query the need seeing as she was here to have her line out and the whole point of the line was to administer drugs and anaesthetic. But it still had to go on one hand and Millie just erupted and didn't stop crying. We saw the surgeon shortly afterwards and whilst talking to him a nurse came in and wiped off the cream as it wouldn't be needed! Millie calmed down, briefly. She had another scream when the surgeon tried to have a look at where the line went in. He withdrew pretty quickly when she reacted. We then met the anaesthetist who sat right back and didn't go anywhere near Millie but somehow manged to gain her trust. A man used to dealing with unhappy children. We then talked to another nurse and answered lots of questions about Millie's medical history. No one had even heard of proton radiotherapy so there were a lot of questions. I'm happy to anwer all questions, we have nothing to hide and if it helps someone else ...

Millie was first on the operating list so we didn't have long before we were taken into the little room used to administer the anaesthetic. I sat on a stool by the bed and held Millie to me. The anaesthetist handed us an iPad(!) and we found some Dora the Explorer to distract Millie with. It was then time to find the wigglies for the last time. It took some encouragement but Millie did get one of the lines out by herself and watched as the anaesthetist cleaned it and administered the 'penguin milk' (a new one to me but it worked well for Millie). She fell asleep quietly and happily. Thank you Gina, Kendra and Kim without your efforts we would not have been able to do today so easily. However, we still missed you!!! The procedure was only due to take 40 minutes so I quickly got myself some breakfast and a coffee before heading back.

I was called to her bedside before she woke fully. I warned the nurses that she would not like the sats monitor and asked if they could put her top back on before she woke up. Bless them, they had done so however, I forgot to warn them about the sock!!! As soon as Millie registered I was there she wanted a cuddle and food! We were shown a seat and Millie started on the first of 3 yogurts. It wasn't quite plain sailing - she had a canular in her left hand that caused her discomfort when trying to use the spoon. It was supposed to stay in for half an hour after she wakes up just in case they have problems. However, because she was looking well and we had done so many anaethetics and she was screaming the place down, they did take it out about 5 minutes later! She then complained about the plaster that was put on the back of her hand so that came off as well. She finally relaxed and started eating again. One of the nurses gave her a large slice of carrot cake that his wife had baked. It was very nice and Millie ate most of it! Being the first in we had the chance to talk to some of the nurses. We will be getting to know them well over the next few months as that is where we will be going for the MRI scans. We were allowed to leave as soon as Millie had finished eating and showed no signs of complications. We were leaving the car park by 11am! It was all very quick. And it is now done. She needs to keep her plaster over it for a couple of days, no bathing yet but it should have healed in about 5 or 6 days and she can then have a bath or go in the pool or on the beach etc etc. Normal life!!!! There are no stiches so we don't need to worry about them.

She somehow looks different without the clear plaster showing around her neckline and her neck looks really long without the strings of the wiggly bag. But best of all is hugging her and not feeling them through her t-shirt. I got used to them but they were ALWAYS there and a constant reminder. And tonight she lay down in bed and didn't have to worry about moving the wigglies so she wasn't lying on them. She can now play with other children and I don't need to worry about one of them accidentally pulling a wiggly. We will have to decide whether Duckie and Ella also have their wigglies taken out. That's a tough decision but we won't rush it. She loves playing doctor with them and it should be part of the memory for her.

We have many more steps to take and at each one will be an underlying worry that the tumour has started to regrow. Proton was the best but it is still no gaurantee. There are various treatment side effects to be monitored for as well which we will always be watching for. However, she has a damn good chance at leading a normal life and we will do everything we can to ensure it happens. Her hair is starting to grow back in places already. She is a strong and determined cookie.

One step at a time. The next one is next wednesday when we have another appointment with our peadiatric oncology team to discuss the next steps. Oh, and physical therapy tomorrow!

I shall continue to blog when something happens. I suspect I'll be doing this for a long while yet.

First post-proton checkup

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.

Home - At last!

We are home and our bags have also finally arrived, they missed the connection in Chicago. The American Airlines flight from Jacksonville was delayed in leaving which meant that we would miss our connection in Chicago. Before leaving JAX we were told we had been transferred to a British Airways that left an hour later. The flight from JAX was delayed even further and by the time we landed in Chicago the next plane was already boarding. We had arranged for 'Special Assistance' which meant we had a man and a wheelchair waiting for us when we got of the plane. He was invaluable. He used the wheelchair to carry some of our hand luggage, whilst I had Millie in the pram, and he led us on a mad dash across the airport. He even got us through security in 10 minutes flat. When we got to the gate it was last boarding and they were doing the last call for us by name! We only just made it and without that man we would never have done so and would have spent the night there. So thank you whoever you are!

We arrived in Heathrow at half 9 on Saturday morning to discover that our bags hadn't made it. I discovered later that the flight we were transferred from arrived almost an hour later, despite having been due to leave an hour before. So maybe we were lucky. Thank you to the BA staff who looked after us during the flight and dealt with our missing bags. Three of the four bags were found pretty quickly and looking at the bag tag numbers online I realised that the missing one would have been part of the sequence except that a digit was different. I sent a message to BA querying it and within hours had a reply saying the fourth bag had been found. I almost replied to thank them for being an intelligent human being and actually thinking about it.

It is very good to be home. Our eldest was delighted to see us and we are so grateful to see that she seems to have grown up a bit but is otherwise no different (except for the 3 cm she has added to her legs!). Millie absolutely adores her and wants to play with her all the time. She spends a lot of her time telling our eldest what to do! We seem to have bred another confident leader with a lot of imagination! Our eldest, bless her, is taking it all in her stride and is, so far, not objecting much to being bossed about by her little sister. They can play beautifully together, it is a joy to watch. Millie is doing so well physically. She is a different child and it is very obvious now that we are back. She has also grown about 3cm in height and nothing is safe from her enquiring hands and ability to climb! Her head is no longer red already and I have gone back to using the Dream Cream. It feels almost normal already with very little dryness. Her ear has also healed. Ears are particularly vulnerable to the effects of radiotherapy and Millie's left ear got very sore and bled a few times over the last weekend and at the end of her treatment. However, the scab fell off overnight and it looks amazingly normal now.

We have been keeping a low profile for the last couple of days - we aren't sure we are capable of being in public and talking to people yet. We are exhausted and suffering with culture shock. I think we are so tired that jet lag doesn't seem to be a problem. Millie seems to be having a problem adjusting to her small toddler bed. The last 2 nights she has woken up at abot 11pm, having crashed at about 7pm. She has then got upset that she is not in her other bed and has gradually woken up to the point where she has been sat in bed playing with her toys. It has been 3am before she has settled again. I have let her sleep a little longer in the morning but we need to keep the 'normal' routine as much as possible. It helps to have another child around that hasn't been through it all. She is proving a good incentive for us to keep to the routine. Without her and no other structure we would be all over the place I'm sure.

I keep thinking about all the people we met in Jacksonville. Our thoughts and hearts are with those still going through proton. And we will always be grateful to those who supported us through the whole process. We feel a bit lost without you.

I must write about one very important event that occurred before we left. We had agreed to tell a bit of our story at the weekly Proton Patient lunch on our last wednesday. We decided early on that we wanted to give something back to UFPTI and this felt like the right thing. One of the many things that Kim wanted to do was get some cuddly gators with access lines to give to other children going through proton and needing anaesthetic. The chemo duck that she gave to Millie was invaluable. The guys in charge of the lunch decided to use the event (and us) to try to raise some money to get 250 gators at a cost of $5000. We almost hit a problem when Millie's treatment was cancelled on the Monday and she needed the extra day on Wednesday. Her treatment time was initially set for late in the morning which would mean we couldn't take her to the lunch. However, Kim asked the pediatric team if we could be moved earlier so that we could still attend the lunch - and the team agreed. We were in for half 8 and made it to the lunch. It was pretty rushed as Millie had her leaving party and we had to say goodbye to everyone as well as let her eat her 3 yogurts and not rush her!

I had written a summary of our story which had ben printed out and handed to everyone. My husband actually did the speaking. He had the idea of getting Millie a large balloon so that he could make a joke about feeling sorry for the prostate patients. He made a few jokes and I had loads of comments afterwards about how funny he was - that's why I married him! We had so many people offer us there support. Thank you to you all for your prayers and thoughts.

A few hours later I was rung by Dominic to be told that he had just received a cheque from a single donor for the full $5000! On top of that they had received almost $800 in donations just at the lunch. They were not expecting to be able to order the gators for another few months. We met the donors at UFPTI the next day.

Gradi and Marti Dunn - a BIG thank you for your generosity. You will help 250 young children get through their treatment with a smile on their faces.

The UFPTI gators will be called Emile and Emily (in honour of Millie!) and will wear their own "Got Proton?" t-shirts.

We can't believe that a few minutes telling our story has had such a huge impact. We gave something back! But could not have done it without the genorosity of the other proton patients. If you also wish to help contact Dominic Brodeur at UFPTI. I will put more details on the the Donations page soon. Thank you!

Last Day - Last minute packing!

It has been so busy over the last few days and I don't have time to do a full blog tonight but I will catch up! There are certainly some things that need to be written but I won't do it tonight.

Millie had her last proton treatment on Wednesday 3rd August 2011.

THANK YOU UFPTI! You have all been the most amazing team. It has been good to meet you. We wish we didn't have to but seeing as we did, Jacksonville was the best place to be. We will miss bits of this place.

We are now spending our last night in Jacksonville. We fly home tomorrow afternoon. Our flight leaves at 16:30, we change at Chicago and then land in Heathrow at 10am local time. It is a 9 hour flight across the pond but I reckon the journey from door to door will take about 24 hours in total. We have a 4-5 hour journey from Heathrow to home.

We are all really excited to be heading home finally. We still have stuff to pack and a room to clean so it looks like we will be up early tomorrow.

It will be really good to get home and give our eldest a hug, make a pot of tea without plastic gloves on, take it into the living room and sit on a sofa to drink it and sleep in a decent bed! Toast and real jam! Vegetables! China plates! Get me home now!

Treatment cancelled for today - bum!

Today was supposed to be the day before our last day of treatment but it wasn't. The proton machine was down and they cancelled all of the anaesthesia patients i.e. the little kids. Including Millie. So we still have 2 more days to go and that has been very hard to deal with.

We got up and ready as normal this morning. There were signs that something was wrong but we hadn't been rung so we didn't think too much about it. We could hear Anabel outside our room and knocking on our door, she is normally treated just before Millie. The gantry waiting times on the website all said 600 minutes but because we hadn't heard anything I thought the webpage was up the spout, not the machine itself. We left the roon and found Anabel and her Mum outside in the corridor. They had bought Millie some clothes and Anabel must have been desperate to give them to Millie. I asked what time their treatment was and was told that they had been rung at 6am and told the machine was down and not to come in. I immediately rang Kim to find out what was going on. She confirmed the machine was down and the last she heard it would not be up until 2pm. I was told to feed Millie as her treatment was cancelled for the day.

I couldn't decide whether I was more annoyed at not being told or at the machine being down and ruining my nicely planned day and week. I had problems not breaking down, it was so frustrating. But I also knew that these things happen, we had been well prepared for such a possibility. I just couldn't believe it had happened at this time. So close and yet so far.

I rang Amy to see if I could find out more and complain about not being rung. She apologised and said that they had been hoping the machine would be up by 10am (our treatment time) but it now looked like not being up until 4pm. I spoke to Kim again later and she explained that the technician knew at 3am that there were problems and started notifying staff immediately. The recovery nurses were told at 5am and didn't even go in, they would normally keep the parents of the smaller kids informed. Also, Dr Danny was very hopeful that the machine would be back up soon. He was apparently very determined to treat Millie, even if she was the only child treated today, because she is so close to finishing. He is one in a million. However, they were not able to start treating patients until 5:45pm by which point they could not get any anaesthetists. They will be treating patients until midnight.

The first patient treated was Hailey - that was her last treatment. She was supposed to have her graduation party this morning at proton with everyone around. But there was noone there this evening, except Kim, so the party was moved to RMH. Hailey wanted Millie to be there and Kim arranged it! Another one in another million.

It took a long time to get over the change in the plan. I cried over it a couple of days. I was just so frustrated that we would now be finishing a day later. It effects our plans for Wednesday as well. We were planning on taking Millie to the proton lunch but I don't see that happening now. I was also counting on having Tuesday night and Wednesday to switch heads from proton to packing and leaving. I am just so fixed on getting through proton on a daily basis that I can't focus on the next stage until we are done. We fly out on Friday and will need to spend Thursday packing. I feel like we have lost a day. Good job I booked the flight for Friday afternoon and not really early Thursday morning - that would have been very stressful.

We were so thrown today that we haven't really managed to do anything. I tried to tackle some of the things that we had lined up for Wednesday. My husband thought about the packing and tried to decide whether we will need an extra case and, if so, how big. He found out that RMH have a few bags so he has had a rummage in their store and come out with two. They are both smaller than we will probably need but we don't really know what we need. One of the staff has also offered to look in their garage tonight! They are so good here, we have been lucky.

A couple of good things came out of today. Millie's head is looking considerably less red and sore than yesterday. The extra day has given her more time to heal before the next onslaught. Also, Millie and I had the chance to meet a young lady, Noel, who comes in to RMH and plays the piano every Monday lunchtime. She is willing and keen to teach anyone who wishes to learn. Millie was showing an interest in the music and got the chance to play with Noel. Whilst talking to Noel about learning piano I had a sudden thought. Playing the piano needs two coordinated hands and the ability to 'see' to the left and right. It could be an amazing occupational training thing for Millie! I will have to look into it when we get home. She loved playing the piano with Noel.

I have decided that Millie is going to be a pilot of a space plane or something. She loves moving things about and has got quite adept at 'parking' trolleys and prams and washing baskets in tight places. She also loves stars! However, I think she might have to be a piano playing, artistic astrounaut. She is forever wanting to draw or colour and even said today that she was going to be an artist! We can't complain it is all good for her.

Ho hum. Two more treatments to go (fingers crossed).

Only a few more days

Weekends are difficult without the routine of proton. Yesterday we didn't do much - just hung around the house taking it easy and thinking about what we need to do before we go home, all the practicalities. We did pop out briefly to see if we could find any manatees in a spot that was recommended but we didn't have any luck. It was very very hot though so we didn't linger for too long.

Today we went out for breakfast and didn't get back till tea time! We didn't do anything particularly exciting. We breakfasted at the Waffle House, for the last time, not just because we are leaving in a few days but because the last 2 visits haven't been as good as the first visit. The hot tea wasn't as good, the waffles weren't as good, the service wasn't as good. We keep going back to places and discovering they weren't as good the first time - maybe we should learn something!

After breakfast we decided to do a quick trip to one of the malls and check out some bits and pieces that we had been thinking of picking up. I guess you could call it souvenir shopping or you could call it treats to make us feel better! The other day we splashed out on an iPad - something we wouldn't dream of owning at home and there is no way we could justify the price normally. But here, well ..., I'm not sure reality exists at the moment. It feels like a very alien life. It wasn't quite a spontaneous purchase. I did have a play on Kim's iPad at proton (she uses them to occupy and distract the kids) and was amazed at how easily Millie figured out how to use it to do some colouring or a jigsaw. So I decided it would be a good 'toy' to take to hospitals with us over the next couple of years. I can also use it as an educational tool for both kids. And, whilst watching Millie play I decided that it could be used to give her practice at finger and hand control. I have already downloaded loads of apps on to it and Millie has been enjoying them and asking for some of them. My husband downloaded a talking giraffe onto his phone before we came over here and that has been a consistent and regular distraction.

The other thing the iPad could be good for is encouraging Millie to keep checking what is on her right hand side. The occupational therapist was watching Millie draw last week and asked if she always draws off to the left of the page. I think she does a lot of the time. This is apparently due to "visual neglect" of the right which is due to the tumour. We knew she had problems processing information on that side but didn't really think about how that would effect her on a daily basis. The therapist reckons that, when looking at a piece of paper directly in front of her, she can't 'see' the right hand side of it. However, she can be trained to turn her head to see it. There is a similar thing going on with the whole of the right hand side of her body, in that she sort of forgets to use it. BUt with training and lots of prodding she will relearn how to use it. Apparently, here, visual neglect automatically qualifies you for occupational therapy. We'll have to see what we get when we get back home. I'm already prepared to battle for a continuation of her intensive therapy.

We are so close, with just 2 more treatments to go. Millie is doing okay. She seems to be a bit more tired than before but that could just be the fact that we are all run ragged and nothing to do with the treatment, at the moment. She slept in the car, with engine and air conditioning on, for about an hour today. One minute she was climbing into the car seat by herself and the next she was asleep which is a shame as we were only going about 5 minutes down the road american style, i.e. by car. We changed plans and let her sleep. Her left ear is looking very raw and sore on the top. She keeps scratching it and making it bleed. She also says that it hurts. I gave her some pain relief this morning in the hope that it would cheer her up, not sure it made any difference. I think I will see if they have any better cream for it tomorrow. The rest of her head is doing ok. It is very dry and I put the medicated cream on about 3 to 4 times a day. When I get the chance I wash her head and apply some of my magic cream. I have to wash her head because the medicated stuff forms some sort of barrier which stops the Lush cream sinking in. Millie has started washing her on head - not sure how good an idea it is, it tends to involve copious amounts of water!

We get the 'talk' tomorrow from Dr Danny. The talk about what happens next. Not sure either of us is prepared for it. Not sure what we are expecting to be told. Not sure how worried to be. We were hoping that he could arrange for her line to be removed before we go home but it doesn't look like that is going to happen. I have asked everyone concerned with Millie's care and have been told it isn't possible in the short time we have. Bum! I even emailed Dr Danny at the end of last week in the hope he could pull some strings. He was away at the end of last week but he still had a look and emailed me back on the Saturday. It was a very nice email but it still said no! He did explain why it wasn't possible - basically a short staffed surgical team and very little time between her last treatment and us leaving. I can't decide whether I am surprised to have got an email from him on Saturday. It is the sort of guy he is. We are so grateful that he has been looking after Millie.

Well, despite being very keen to come home we still have loads to do before we can. One of them being to prepare the presentation for the proton lunch on Wednesday. Guess that is what we will be doing tomorrow! We also need to start thinking about being home and what we are going to do for the first few days and on through the summer holidays. Not sure I can think past tomorrow at the moment and we have a busy week - Hailey's last day tomorrow, our last day on Tuesday, proton lunch on Wednesday, pack on Thursday, leave on Friday, collapse on Saturday (with a 5 year old we haven't seen for 8 weeks)!
We'll be home soon! Yeah!!!

Why is a star (fish) like a diamond (in the sky)?

I cried a bit. I wrote a bit. I talked a bit. I am feeling a bit better and thank you to everyone who has offered their support. It means a lot to all of us.

Millie is doing well. Her head has got really red and is giving off a lot of heat - just like bad sunburn. It is reddest around her left ear and towards the back of her head. She has also started peeling - like when you get bad sunburn. It is the small flaky type of peeling rather than lumps of skin and it sort of rubs off. She has got quite itchy with it and I am having to keep her finger nails very short. I have discovered that washing her head with a bit of natural sponge helps to remove the dead skin cells and stops the itching for a bit. I can imagine that a cool sponge over a warm itchy head might be quite relieving as well. The medicated cream helps keep the itching away, however I have also discovered that the Dream Cream does as good a job, if not better. So I am now sort of alternating the creams, and washing her head often.

We had a very late treatment time today - 11:30am. I think it is the latest we have been and we aren't the last, there are 3 boys after. This morning, despite a planned late night and no alarm clock going off at 7am, she woke up somewhere round half 7. She played and muttered and lay down and played and muttered till about 9am when I finally decided we had to get up. She seemed grumpy soon after getting up and complained that she was hungry. She knows that she can't eat until we have seen Kendra so she hurried us out of the door! I had to keep delaying her by doing 'one more thing' and getting ready slowly otherwise we would have been there an hour early. As it was we were 15-20 minutes early and she was determined to go straight round to recovery. Not even the possibility of making a butterfly for Kim with Chrys could stop her, she paused briefly but only briefly! Fortunately, they were running early so we didn't have long to wait before it was time to 'get her numbers' and 'hook her up'. She knows what needs to be done before we can go and listen to music and have the milky medicine but she doesn't yet understand that the timing is dependent on other things. So she was trying to get things moving faster at every stage. When the anaethetist came in to check that everything was ok, Millie took her blanket off and said 'Ready to go!' and almost got off my lap to walk to the gantry! I had to delay her by a few minutes because they weren't actually ready! She was just hungry! The poor thing. The last couple of days she has gone to sleep laughing at Steve the porter (very important bed pusher and more). We have also spent about 4 hours in the building each day this week because Millie likes to play afterward and we don't have the energy to drag her away. It means she looks forward to coming back so we don't mind.

We have had the chance to get to know Gina and Kendra a bit more over the last few days. They have both been working there for 2 years and they work really well as a team. They also know what they are doing and are very good at it. I have watched them manage the many different kids and I have seen them manage the many worried and frustrated parents. They have a policy of letting the child sleep for 20 minutes post treatment before calling the parents. Being a parent and waiting for that call is hard and I know I wanted to be with Millie as soon as she was out. But the policy is there for a reason. They need the space to make sure that the child has come off the anaesthetic ok and is sleeping peacefully. There have been problems that have needed intervention and that really is the worst time to have a parent around. And some of the children 'fight' when they come back, even though they are still asleep, and need some gentle restraining. Apparently Millie does sometimes and I wouldn't want to be there watching them restrain her, gently but firmly, so they can monitor her and stop her hurting herself. From experience, I have learnt that Millie recovers quicker if she gets a good sleep afterwards. If she wakes up before her 20 minutes then she is so groggy and grumpy for the rest of the day it is just horrible. In the first few weeks we would be rung after 20 minutes and would go round but I would have to be quiet because Millie would wake when she heard me. These days we don't get rung until she is stirring. She is happy enough, just, that she no longer needs me to be there the instant she wakes. And all of this has been gently managed by Kendra and Gina! A big thank you to you both for making this much easier than it could have been.

Millie is very unaware that we are nearing the end of our time here. I think it is going to be quite a shock to her when we get home. This has been a large part of her short life and she has made many 'friends' amongst the people that we see most days, both in RMH and UFPTI. She has become very forward and inquisitive, if she vaguely recognises someone then she will stay and chat. A long way from how she was when we arrived a few weeks ago. However, her stubborn streak can be a real pain! It can take a long time to get her moving from somewhere once she has decided that is where she wants to be. It has been a struggle all day. She has also developed the habit of almost parroting everything we say. She doesn't quite copy as she is very good at turning the sentence round to mean something slightly different, for instance using 'you' instead of 'I'. AND she has become damn good at asking difficult questions - the subject heading being one (of many) today. She was given a dried starfish at one of the hotels and she was looking at it this afternoon when she suddenly came out with the above question. She basically put together the information she has about stars, including the song Twinkle, Twinkle and came up with 'like a diamond'. However, she knows it is a star and that it is not the same as a diamond so she asked why they are alike. I saw her thinking it through but didn't realise where she was going with it. To be honest, I am pretty impressed with her logic. I have no idea what other children do at this age but I don't believe our eldest would have thought like that, then or now. I did, of course, tell her about sparkly diamonds and stars. So she should now have a better understanding - till the next question! Oh, and I mentioned that the star was really a starfish and normally lives in the sea. Guess what she then wanted to do - yep, put it back in the sea! So then followed a whole other conversation!

I have started tackling the questions about what we do when we get home and have the beginnings of a plan. I have sent some emails to the UK medical team and have had a speedy response. We will be going to the oncology clinic on the first Wednesday we are back so that they can check her out, review her meds and review her rehabilitation. Our oncology consultant is suggesting Millie get an MRI scan 12 weeks after the proton treatment has finished and then every 3 months after that. That one is going to be tough. We have also been told that her line can be removed as it is not needed once this treatment is finished. Yippee! Unfortunately, we have just been told that they can't fit Millie in for the surgery before we leave next week which is just a real bummer. We were really hoping that we could leave here without her line and she could get back to a relatively normal life without the difficulties associated with caring for her line. I'll just have to see how quickly they can do the op at home. I feel a bit better knowing more about what happens next.

We have 8 more days here and 4 more treatments! So close ... oh, to be in my own comfy bed at home.

Stop the world - I REALLY want to get off

This has just got too hard again. I just want to go away and forget it ever happened. I had a cry this evening. I lay down next to Millie whilst she was going to sleep and I started thinking about the next stage, the future. It feels so daunting and it is all so unfair. Why her? Why our beautiful daughter who has so much to give the world? I'm crying now just writing this. It isn't a big cry - I can't let myself go yet, it will be too painful and take too long. This cry is a small one that is helping to reduce the pressure of everything. But it still feels crap.

I was lying next to Millie thinking about coming home and the bedtime routine there and then thought about our eldest and how I would love to give her a hug and how it might still be difficult to give her the attention she deserves. We have no idea what we are coming back to. We don't know what Millie's after care is going to consist of. All I know is it is going to be hard work. And then we have the permanent worry of the tumour returning or her suffering with another side effect of the treatment. It is going to be a waiting game from one month to the next for the foreseeable future. And I am not sure I can live with it.

Dr Danny saw Millie today. Millie was a star and voluntarily sat still whilst he listened to her chest. She even asked him to play! He says she is doing really well. Her head will probably go more red over the next few days and she may suffer with some peeling but he doesn't think she will get any worse than that. Which is nice to hear. However, he did say that he would talk to us next week about Millie's aftercare plans. And that was probably the last straw today.

The beach has worn us out!

Millie really enjoyed her time on the beach this morning and continued to exhibit the explorative traits that she was starting to show last may. She kept wandering off! Without a care in the world, going to see whatever she wanted to see. And she really enjoyed jumping the waves, well, with Mummy's help of course! Daddy showed her how to kick her feet in the water when she was picked up, so now she wants to do it all the time and is a really good kicker! Got me wet! It is just such a shame we have to keep her dry from the bottom up so that her wigglies don't get wet and then risk infection. Last thing we want. I am trying to find out if we can get them removed before we leave as that would be fantastic. However, we probably won;t be able to get her wet still as we will need to keep the area dry for about 10 days. We might be able to get away with a plastic patch. It would just be great if we could take her to the beach before we leave and let her get as wet as she wants in the very warm water. It is, so I have been told, as warm in the sea as it is in the hotel pool! It is definately warm -like a warm bath. Makes a difference to the enjoyment of a beach.

Millie was so tired that she fell aslepp on my whilst we were eating lunch. She had some drink and a few bites then curled up. We were eating by the hotel pool so I carried her up to the room and we finished eating on the balcony overlooking the pool and sea. We even saw some of a wedding. All the blokes dressed up in black 3 piece suits - not a great thing to wear in this heat. But they all looked smart as they wandered down to the beach. The large smile on the groom's face said it all!

Millie finally woke up at about half 3 so we headed into St Augustine. It was very hot in town. Last week we had bought tickets to go into an attraction called Ripley's Believe It or Not! So we did that. It took about an hour and a half and had some of the weirdest things from around the world. Ripley traveled and became well known for traveling to 'exotic' places. A lot of it is now in St Augustine. It was vaguely interesting! Afterwards we headed down the road to find some food. We had been recommended a place which we did find and eat in but it didn't do anything for us. The food was passable - I had a tuna salad and I now know how barely cooked tuna really tastes! It was pretty good, just the rest of the salad let it down. After tea, we wandered along the shopping street until it got dark and the bugs started annoying us. Millie is sleeping soundly, she curled up before I had finished reading her book. I shall be following very soon - it will be early tonight. I am shattered. We are all shattered.

More beach tomorrow and then a leisurely afternoon before returning back to RMH to get ready for our last full week. Nearly there - I'm sure it will drag.

Out and About Again

It's been a long week. And we are back in St Augustine. I have found a slightly nicer hotel although we are still only in one room. But the beds feel better and bigger (so far) and we can just see the sea from the window. In fact, we even have a balcony! It is only big enough to get 2 chairs on but ... it's still a balcony! We have just splashed out on some flip flops so we are ready for the beach tomorrow morning. However, looking at the state of us all I'd be amazed if anyone woke before 9am. Roddy wants to go and 'do' stuff in St Augustine but I think we would all benefit from a gentle day of beach and not a lot else. We'll have to see how we feel in the morning.

This week has been tough. Not sure why. It was almost an anti-climax getting to this afternoon. Probably because I have been so eager to count the days left and getting to the end of this week is an important milestone. We only have 7 treatments left and only one whole week. We are all shattered by the end of the week and although we recoup over the weekend we never feel as good as we did the previous monday. The same seems to apply to Millie's head. It is now looking very red and we have been advised to use the medicated cream. It has been getting redder all week and has been at its reddest in the early evening and overnight. By the morning it has been looking a lot better but not quite as good as the day before. It's the same at weekends, it is very red tonight and I expect it to calm down a bit over the next couple of days but it will soon be this red again after treatment. Hence being so aware that we only have one more full week of treatments to go. Her head looks like it has been seriously sunburnt (I guess it is all radiation) but it doesn't seem to hurt her, it just gets a bit itchy. And hopefully she won't start to peel or blister. Even if she does it should heal fairly quickly after treatment has stopped. I'm just hoping the hair starts to grow back soon as well. My little(!) brother, encouraged by his young lady, sent Millie a summer buff - it is nice and soft and she has worn it for longer than any of her other hats so I think I can say that it went down well. It is also UV protective and wicks moisture away, something I think Millie needs.

Despite it being a long week, Millie has done really well again. She has gone through her proton treatments without a mutter. We have even solved the problem with the drip line. Well, Kim solved it for us. She suggested putting one of the warmed blankets on Millie's tummy so that she had the sensation of heat rather than a cold plastic tube. It also has the advantage of keeping the drip line still and hiding it. She isn't that easily fooled though. As soon as the anaesthetist comes in and says they are ready for her she throws the blanket off, checks her line is not tangled round her legs and then gets ready for me to pick her up. She is also aware of where the line is when I am carrying her to the gantry and knows that they use it to put in her milky medicine. I think she is also aware, in some form, that she goes to sleep on Mummy's shoulder when she gets the milky medicine. She has started resting her head on my shoulder ready to sleep and yesterday I tried to lie her down before she had actually gone to sleep, she had just completely relaxed. Everyone comments on how well she is doing and how different she is now.

And that difference isn't just with the proton treatment itself. She is full of confidence and beans. Yesterday she woke up before I got round to the recovery room. When I got there she was having a cuddle with Kendra and appeared to be very happy. Kendra said she was enjoying it and was happy to cuddle Millie anytime. My heartstrings tugged - part of me glad that she is finding other people to trust (something that is a very normal and vital part of growing up) but another part upset because she is beginning to move away from needing me all the time - she is MY baby. I guess I also need to relearn to trust other people to look after her. We'll get through this first though. One step at a time. She also loves playing with Kim and giving her hugs. Just today, I have had about 3 proton staff offer to take her home with them because she is currently being so 'cute'. Little do they know! And yesterday, our once shy toddler almost threw herself at Miss Paula during her fourth oncology pediatric check up! Paula didn't expect it but was very happy to receive a hug from Millie, before commenting on how she had changed in the last few weeks. And she has changed - she is more herself now than she has been for a year or more. Which is just such a long time in a toddlers life. But what is pleasing to see is that we are seeing more and more of her personality developing despite everything, and it seems to be very like the one she was beginning to exhibit a year ago. She is going to need to go back to childcare come September - she will need it and I will need it!

We are now the senior family at proton. Jacob had his last day yesterday and they fly out tomorrow. Good luck guys. When we get back from St Augustine we will be the most senior family in the house as well. That is an odd thought. It means that everyone that was here when we arrived has now gone, which is very weird and sad in some ways. But it also means that it is our turn next. It also means that we have some responsibilty to keep an eye on the newer families and make sure the tips and knowledge is handed on. Although that might be a bit difficult as 2 of the families do not speak english very well. However, that does not stop Millie who has made friends with the only other young girl going through proton - Anabel. We know nothing about her other than the fact that she has the biggest brown eyes and the most gorgeous long thick brown hair and is very friendly. I dressed Millie in her pink Got Proton t-shirt, with pink leggings, this morning and when we got down to the kitchen we discovered that Anabel was wearing the exact same thing! They looked so good together and Millie was thrilled! Anabel is probably about a year older but is only a little bit taller than Millie. Mind you, we are finding that Millie is very tall out here and I don't know whether she is tall for the UK as well or whether everyone is just a bit shorter out here. She certainly seems to tower over other children that are around her age.

Talking of being our turn to leave soon, we have booked our flights - still a tad risky for 7 treatments left. We are leaving here on the Friday 5th Aug at half 4pm and getting into Heathrow at 10am on Saturday. We still have to do the 4-5 hour taxi ride home but we should be home by tea time on Saturday. We could have left on the Thursday but we would have had to be at the airport for about 5am and would have arrived in the UK at about 10 in the evening. I decided that those times would mess us up more than the jetlag would so we are leaving on Friday instead. I am not sure how we are going to cope with our eldest because we will be so tired and have so much to do to sort ourselves out. And so much catching up to do. We'll work on that. Let's get through the next week and a bit first.

Maybe not as bad as all that

With proton being earlier we would like to take advantage of the afternoons and go somewhere. However, the temperatures are heading upwards again. We had about 33C again today and it is supposed to get hotter in the next few days. I checked out the forecast for here and the UK. The low here is still higher than the high in London. It looks positively chilly in our home town. What happened to the summer?

I have just contacted Alison, our radiotherapy consultant, to see if it would be okay to have Millie's wigglies removed whilst here. As far as we know there is no need to keep them in at home and we would have to do a special trip, probably Bristol, just to have them removed. Dr Danny says he can arrange it for us if we get the OK from the UK team. I have also asked her what the next steps are for us once we get home. It is beginning to dawn on us that we will be heading home in a couple of weeks. And although proton will be over the next phase will begin.

So, whilst thinking about heading home, I have also emailed our travel coordinator to see if we can get some firm dates and times for travelling back. That will make it more real. However, we still have to be cautious as Millie may still miss a treatment due to unforeseen circumstances. I am trying to decide what I am looking forward to most and, apart from certain people, it is sleeping in my own comfortable and large bed! Not looking forward to sorting out food again though!

Millie did ok with her treatment again. It has become routine which is good. Kendra did her numbers and attached her to the drip today and she has a different way of doing things. But Millie was still happy for it all to happen, including holding a finger out for the sats monitor, holding her arm still for the blood pressure and getting a wiggly out before being asked. Still not happy with the straw though, she says it is cold but we can't work out whether it is 'cold' when it rests on her tummy or cold when it goes in. We saw Dr Danny today and he says she is doing well. I asked about the paler patches on her head and he thinks they are areas where the skin has flaked a bit and it is new skin showing through. He expects the patches to grow in size over the next few days but not to blister badly. He is happy for me to continue whichever cream works on her. So, we are back to the Dream Cream. So, I now need to say a BIG thank you to Helen who has very kindly arranged for some more cream to be delivered to me here. Two pots arrived yesterday which meant that I could donate the last quarter of a pot to Hailey who is also losing her hair. Hailey has given Millie a couple of bandana type things so it was a nice swap.

Ahhh! Millie has just rolled over (finally) so I can now go and cream the other side of her head!
Right ... done!

This afternoon Millie had PT and OT. She worked really hard in both sessions. Both therapists are quite tough on her and concentrated on making her use her right hand by holding her left one and repeatedly telling her to use her right. I'm not entirely convinced by the way they do things, it seems a bit hard, but Millie coped (just) and it is only for a short time. I shall give them a chance, we have both of them till we leave now. I have just had to rearrange Millie's times because with proton now earlier we can't do PT and OT in the morning. But at least now we have all our the sessions we are supposed to have and they are timetabled to be one after the other. Which saves us from coming and going all the time. I asked our occupational therapist if Millie would regain full use of her right hand and she said yes, almost definately. The brain is still being impacted by the proton treatment so it is not able to recover yet. However, once the treatment has stopped it will 'repair' itself and we should see improvements in Millie's physical development for another year. I also asked about her balance and the therapist reckoned it is possible that she will regain her balance fully but that she might not. It sounds like the next year is very important for making sure that she gets all of the physical and occupational therapy that is recommended. It is the continuation of a long journey but who knows where we will be in a year's time.

Nothing much happened today. Other than offering to help make things better and easier for those that follow. A gentleman from Leeds is in Jacksonville for a few days gathering information to help improve the communication and transfer of patients out here. Others here have been subjected to some conflicting advice so he has been tasked with working out how to improve it. We had a brief chat and he has taken my email address! Anything I can do to make sure that others get to do this ... The government has recently found some extra funds to enable more people to have proton treatment. The number I heard was 400, not sure it is all going to be children. This place would not be able to take them all. They already have 100 a year and you can see that it was hard work last week. But this is widely considered to be the best place, particularly for children, so we will have to see. I would quite like to be properly involved in the project as it involves collecting information! We shall see!

I think that is all. TEN more to go. I can start the proper count down!!!

Another Monday

Today was the beginning of 6th week here. Only two more Mondays to go and the one after that we will, hopefully, be home (and shattered). Today was Millie's 22nd proton treatment - she has 11 more to go. Today was a mixed bag of good and bad.

The good stuff.
We started earlier than we have done previously which meant we had more time in the afternoon. We just took it easy this afternoon and stayed in RMH whilst Millie played and got to know the other proton children a bit better. They are more her age than some have been over the last few weeks. Unfortunately, most of them are Hispanic so there is a little bit of a language barrier but it doesn't seem to stop the children playing with each other. It is hard to talk to the parents who don't seem to know much english and I have even less knowledge of their language. But we all smile and nod heads at each other. One of the Hispanic children is a little girl called Anabel. She is probably a year older than Millie and she seems quite sweet and as willing to play with another child as they are at that age. Millie has become more accepting of the fact that the play areas are not just for her to play in and I have discovered that if I ask her to choose what the other child can play with she doesn't get so worked up. It does of course depend on how the other child reacts but I think Millie has discovered the joys of having others around so she is a but more forgiving than a couple of weeks ago. She was quite happy to push Emmanuel round in the little car despite the fact that he jumped in whilst she was pushing it empty.

Millie is getting better and better at climbing. Which is nice to see but is also very alarming at times. This place is not very child friendly with regards to 'safe' areas. All the surfaces are hard so that they are easy to clean, understandable in a building like this but it means that we have to watch her all the time. It is made worse by her reduced balancing capabilities and the fact that she looks so vulnerable without any hair. The other day she managed to climb onto a chair that is about chest height on her. It happened so quickly and easily that she was up before either of us twigged what she was doing. It is amazing to see how the natural instincts are still kicking in. Climbing is a new skill that she just can't get enough of! She climbs anything and everything in sight. And because she is gaining in physical confidence, today, she went down the slide by herself. Not just once but many times. She really enjoyed being outside tonight and I think her balance is getting better. She had a lot of practice yesterday what with sand, waves and boats!

The not so good stuff.
The change in routine knocked us all out of sync somehow. We didn't know whether we were coming or going and matters got worse when we got to the hospital cafeteria to discover that they had stopped serving breakfast and hadn't started serving lunch. We ended up having a doughnut for breakfast as that is what is available on Monday mornings at proton. We have always missed it previously, which is probably a good thing because the doughnuts are out on low tables in places that Millie can see before she has her anaesthetic. She now understands that she can't eat beforehand but a couple of weeks ago that would have been very difficult. We have also changed gantry - she is now being treated in the blue one which is down the corridor. The red one is directly opposite the recovery room and we have got used to simply walking across the corridor. The blue one is right next door to the red one, just turn right out of recovery and go about 20 yards down the corridor. Millie wasn't sure about the different place, however it looks exactly the same inside and we had our favorite anaesthetist who likes to sing along with the music and make Millie laugh. She was ok though.

Her head is now looking quite red and today it has small paler patches within the red. The skin gets burnt by the radiation, like sunburn but sunburn that gets burnt every day for a prolonged period of time. She has been doing ok so far with some redness in the afternoon but by morning it is more pink. The paler patches look like the beginning of blisters which would be heart breaking. I have applied the medicated cream tonight instead of the Dream Cream in the hope that it will help the skin to heal and prevent the blistering, if that is what it is. We are due to see Dr Danny tomorrow so I will ask him about it. Jacob's ear is suffering with the treatment. Some skin came off during cleaning and it bleeds so it now looks black with dried blood. I don't think I can bear for Millie's whole head to do that. It might not but ... we have to be prepared for it.

Ollie and his family left to day. It was good to see them go now that he has finished his treatment but we will miss them. Millie will miss Ollie. Although I told her this morning before we left for proton and she said goodbye to Ollie and gave him a hug, it didn't sink in. As soon as we got home this afternoon she wanted to play with Ollie. I had to explain again that he had finished his treatment and that he had gone home. She sort of took it onboard but was distracted again. We'll see if she remembers tomorrow. I am sort of expecting her to get upset at some point when she works it out. Jacob goes on Saturday.

The weird stuff.
My husband got his hair cut! It has all gone. No more ponytail. He has had long hair for more than 20 years. He will be donating his hair to Locks for Love who make hairpieces for children with hair loss. The hair dresser who restyled him is called Michelle and she comes in to RMH once a month to cut our hair for free.
My husband looks a different man, younger. It will be very strange in the morning. If you know him and want to see the pictures send me a message.

A Bit Better Today

Today was a bit better. we got up and packed whilst Millie slept this morning. We then managed to get her up and drove to the cafe next door to have breakfast. Back to the room, changed into beach gear, threw everything in the car and checkout .... then we went to the beach!!!!

The beach is massive. It stretches a long the coast for as far as the eye can see - in both directions. Some people drive onto the beach which was a bit weird for us. But the important thing is that Millie had a really fun time digging holes, making sandcastles, jumping waves and collecting shells. We managed to wrap her wigglies up in a purple plastic surgical glove and tape the glove across her chest. We spent about an hour and a half there. It was hard work getting everyone changed out of beach gear, apart from the reluctant toddler causing problems we all had to share the gents loos next to the hotel pool. We had no access to our room because we had checked out.

We tried to go back to the cafe next door for lunch but it and the car park were full. So we drove and drove and drove looking for somewhere that looked decent to eat in. Hard work from a moving car. Millie ha a cry about leaving the house and then fell asleep. She must have had a good hour of sleep whilst we looked around for food. Eventually we drove in to the centre of St Augustine and ended up having hot dogs! We then pottered about the shopping streets for a bit before going on a cruise down the intracoastal waterway. The cruise was just over an hour and a nice way to relax. Millie kept active throughout the cruise! There weren't very many people so it didn't bother anyone, especially as they were all outside and we stayed inside. The windows were open, we could see very well and it was in the shade. Why be outside? We saw some dolphins!!!! They didn't come very close but we saw some - finally!

After the boat ride we went back to the place we had eaten in last night. Unfortunately, the food wasn't quite as good as last night so I asked if there was a different chef. No. But the waiter apologized and took my comments back to whoever is in charge and came back with a piece of key lime pie in a box to take away! I've just eaten it - it was very nice! We came back to RMH after eating and arrived here at about 9pm. I managed to get Millie bathed (another glove) to remove the sand and snuggled up in bed within the hour. Gotta be a record for us. She is currently wearing her Po hat because she was cold when she came out of the bath. She does get cold quite easily so I have started keeping a warmer hat to hand. She hasn't moved since she fell asleep 2 hours ago! I have managed to cream one side of her head but I can't get to the other side until she rolls over! She has lost even more hair. The patch on the top of her head is slower creeping down the right hand side as well. The poor thing has very little hair now. But she still has her smile and she charms anyone she meets.

We start our new schedule tomorrow. We have to be up an hour earlier than we are used to. This week is going to be tough. But only 2 more full weeks to go plus 2 days. Only 2 more weekends to get through. And a list, as long as my arm, of things we still want to buy!

Terror Toddler in Florida

Well, we made it away from RMH but I wouldn't say we are having a "good time". We have spent the day at each others throats, and that includes Millie. It has to be the combination of many things but it is probably a miracle that we are all still in the same room and no one got injured. I finally had to get everyone up this morning at 9am otherwise we wouldn't have done anything and we have to get our day back to more normal times for next week. Millie woke up grumpy, my husband woke up grumpy (something to do with the air conditioning unit keeping him awake all night) and within 20 minutes I was fed up with them both and decidedly grumpy myself. We had very little idea where we were going for breakfast despite being given a recommendation (no food outlet onsite). We finally found the place which is about 4 miles away and was only average in food and serving etc. We won't be going back. Millie got really hungry and started having a loud strop, which I understand, but was just extra hard to handle today. Once she had food she calmed down, a bit.

After breakfast we decided to go on the train/trolley tour around the town. There are 2 tour companies - one had a red 'train' whilst the other does a green 'trolley'.You basically sit on it and go round the town and get off and on as many times as you want at any of over 20 stops. We went on the red train because that what Millie decided and, today, there was no reasoning with her. We would probably have done the green one, if we'd had the choice, as it seems to have more buses and therefore you only have to wait a few minutes for the next train. We managed a few stops, including the old jail which had a very good tour guide, before we needed to eat again and then get on the "last" train round to get us back to our car. It is an hour and half tour if you stay on. We had managed the first 20 - 30 minutes so had to sit on the uncomfortable bench seats for an hour. Millie actually fell asleep next to me so I hauled her onto me and she slept for about 45 mins.

After we eventually got back to the car and purchased a few more souvenirs we walked along the road towards the 'fort' and along the front. There are lots of things to see and do in St Augustine. The town claims to be the oldest european settlement in northern america, about 500 years old. It was settled by the spanish and attacked by pirates because the spanish were taking boat loads of treasure back home. It was also burned to the ground by Sir Francis Drake in 1586! So there is a lot of spanish influence (e.g. fake houses standing where the originals were but are no longer because they fell into disrepair and were knocked down), lots of pirates and 'old' american history. We found a nice seafood place to eat that had shrimp on the kids menu. Millie had shrimp and fries and ate all her 6 shrimp followed by some bread. I had crab cakes this time which were ok. The best bit was the drinks - 'frozen' non alcoholic cocktails. I had a pineapple and coconut one - yummy!

I think we all felt a bit better after eating. Today had been very stressful. We didn't know where we were going, where to eat etc etc. Being in a strange place is hard in normal circumstances. But on top of everything Millie has decided that she needs to exert her own preferences. I have lost count of the number of times I have had to tell her not to do something. I have been developing my own 'discipline' method that has been working with her. If she doesn't listen to me and stop doing something then I tell her I will count to 5 and then she has to do whatever or I will do something. For example, she regularly gets distracted climbing the stairs at RMH and I have to encourage her to keep moving. I give her the choice of walking up herself or me picking her up. Because she is so determined to do everything herself my normal threat is to do something for her. Up till now it has worked 95% of the time (it is a matter of coming up with the right consequences!) but today I must have used it over 20 times and had to follow through 2 or 3 times. She is obviously pushing her limits as all normal toddlers do. I know it is a development phase and I know it won't last long and I know she has to do it. And a part of me is pleased that she is doing it. However, a large part of me is wishing she wouldn't so it for another 4 weeks. She has also discovered the art of screaming and crying loudly in an attempt to get her way. It hasn't worked yet and gets ignored which is funny when she works out it isn't working but still a badly times annoyance. She has also started to be more physical, so hitting, kicking, pushing away, throwing things etc. Again - normal but please, not now Millie.

The next couple of weeks are going to be hard. Having a terror toddler on our hands is going to make it very hard. We are nearing the end, although we still have 2 weeks and 2 days to go. I have seen others reach this stage and start getting really stressed and fed up. I think it is because we are so close and yet a very long way still to go. Also, we are beginning to think about what happens next and we currently have no answers, and may not for a long time. That is definately beginning to take its toll. Not quite sure how we will survive yet. Will work on it though.

In the meantime we ARE going to the beach tomorrow very early, breakfast will be next door as soon a s they open at 7.30am. Yeah! Right! We also have to check out of the room. Then I want to do a boat cruise, we have to do the pirate museum and we have tickets to another museum  that we were going to use today but didn't. Then there are the different shops that we would like to window shop in, preferably without Millie but that won't happen. Ho hum!

Nearly there. One step at a time.

Another Weekend Away

We didn't get the chance to skype or talk to our eldest today. We try every day but it is just really difficult with Millie's treatment time. However, we are changing times next week and we will be earlier. I still haven't worked out whether we will be able to skype but it will give us more time in the afternoon. There have been a lot of children finishing their treatment over the last couple of weeks, including Ollie and Brycen today, and not many starting. Next week there are only six children that will need an anaesthetic instead of the 14 who did two weeks ago. We will also be moving to the blue gantry which will be a shame as Millie has got really used to the whole thing. I am worried that she will take a dislike to the change and things will be hard again. She was so good today. She even said, as we were walking to Kendra's room, "Milk medicine go in wiggly and in my tummy". I talked to her the other day about the fact that the medicines that go into the wigglies then go into her which is why she can feel it. I have only just realised that since talking to her about it she has been ok with the anaesthetic. Wow! I hadn't twigged that until just now. She's a bright cookie - taking that onboard and accepting it. All the proton staff are impressed at how well she is doing now and how different it was 3 weeks ago. We are impressed and slightly unbelieving. All we have to do now is crack the drip line phobia. She is absolutely fine with everything except for the drip. She has a real bad wobble when it is attached and we really don't know why. We think that it pulls on her line and that it feels uncomfortable. But I'm not totally convinced. When it is attached the line has to be moved so that she can't see it. She covers it with her top and tries to hide it. She is slightly better if we give her the job of holding it, especially when we go into the gantry. I think we will have to talk to Kim about it.

Back to our times for next week! On Monday we have to be there are 10:15 which is an hour earlier. But Sarah finishes then so on Tuesday we move an hour earlier again. On Wednesday we are back to about 10am because they have a meeting first thing and treatment starts after that. On Thursday we are back to 9am ish but it is Jacob's last day so we then move to 8:15am!!! Our whole day is going to have to shift forward by about 3 hours in the next few days. The whole process normally takes about 4 hours from leaving RMH to getting back. On Friday we will have to get up between half 6 and 7 - a time we have not seen for a few weeks. But we should be done by midday so we will have a good 3 hours extra in the afternoon. Not sure what we are going to do with ourselves. As far as anyone has been able to say we will be keeping that time for the rest of our treatment, although it does depend on new arrivals starting treatment and what position they need to be slotted in. We are going to have to make loads of changes to our routine. We won't be able to go over to Shands hospital and have our daily salad for lunch, although I think we might have to check out their breakfasts! We are going to have to move all of Millie's therapy sessions which are all early in the day. They will have to be done in the afternoon now which means that Millie may still be wobbly from the anaesthetic but at least she won't be hungry! We are goign to have to go to bed earlier - all of us. That routine might be hard work as currently Millie gets to play outside with the other kids after tea. She won't be able to play for as long which would be hard if Ollie was still here but as he isn't it might be easier. Humm - change!

We haven't spent much time at RMH this week. On wednesday night we decided to go out for tea, spurred on by discovering that RMH was having problems with its water supply because a nearby workman had dug through the mains water pipe. The local hospitals were also affected so not a good move. We were told not to use the water for drinking, cooking or brushing teeth as it could be contaminated. It was also recommended not to wash the ill kids with it, although it was fine for the adults. Bottled water has been provided but it's not easy brushing your teeth with a cup of water. Tests were done on the water and this afternoon the all clear was given. We were quite glad not to be around much. As I said, on wednesday we went out and ended up at The Cheesecake Factory which has been highly recommended by many people. It does do 10's of different cheesecakes but it also does some very good main courses and other normal stuff. However, there is nothing normal about the menu - it is huge. They must have over 100 different dishes available. The menu is about 20 pages long! It took ages to choose. I had shrimp and fries and got some pasta for Millie working on the assumption that she would have a couple of my shrimp. The shrimp were massive - I have never seen shrimps that big. They came in a breaded batter of some sort and were so huge I assumed that there were 2 shrimp in each parcel but no ... just a single huge one. And there were about a dozen of them. Millie ate 4 as well as loads of my fries!! But no pasta! We went with Ollie and his mum and sister. It made a difference having company. We will miss them when they go.

Last night was Family Fun Night at the Proton Institute. Chrys, the artist in residence, has been asked to do something and she came up with a fantastic project. She put down 3 very very large sheets of paper next to each other and got the kids to done aprons (with "got proton? on) and plastic shoe covers. They then wheeled huge rollers around the paper. Each roller had been covered with foam shapes and dunked in paint. There were also poles with round flat ends that foam pieces could be stuck to and turned into giant stampers. Millie had a fantastic time (with Daddy!) and lots of photos were taken of her. We have said that we are happy for them to use the photos in any way they need to so that they can get more funding for pediatric support. Photos attached.

Tonight, we are in a Hotel Lodge (whatever that means) in St Augustine which is only an hour down the road but it gets us out of RMH for a couple of days. A change is as good as a break. We are right next to the beach!!! We can't see it from our cheap 2 bed small suite with a built in 'kitchen' but we have been to see it and it is definately there. We have to walk past all the other rooms and the pool and then down a wooden walkway that goes over the dunes and then down some steps and wahey - the beach. And a beach for nesting turtles at this time of the year. We went down to have a look after we had got everything out of the car and before gettign Millie in to bed. It was dark but we could just about see by the light of the few dim lights around. Because it is a turtle nesting beach they are not allowed to put up lots of bright lights at this time of year as it confuses the mother and baby turtles who, if I remember correctly from my turtle conservation days, use the reflection of the moon on the water to get to the sea after hatching. Tomorrow we hope to get up early, find breakfast from somewhere and be down on the beach before it warms up for a bit and then go and check out the rest of St Augustine. We still have to jump the biggest hurdle of protecting Millie's wigglies from sand. We have come armed with plastic bags, surgical gloves, tape and plastic patches. We are not sure which combination will work best for Millie but we will have to make sure she has lots of fun so that we can do it again.

It'll be nice to have a weekend doing something else. Then when we get back to RMH we will only have 12 treatments left - that is 2 weeks and 2 days. But first, the weekend.


PS - For those interested, I have managed to get a donate button working for Millie's Future Fund, see Donations page on the right. It is clunky and uses paypal. It does take cards but I have to pay for the privilege. It also takes you away from the site. I will try to improve things over the next few days when I have some time. In the meantime - Thank you.


PPS - Thanks you to Millie's nursery who held a fund raising event on Thursday. We are very grateful. Millie needs to come back and play!!! I'm sure she will love the place now that she is her old self again. And you won't know what hit you! But I will get some much needed peace. Thank you.