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.
When you have Little Feet and it's a Long Walk, you take One Step At A Time.
Thursday 25 August 2011
Thursday 18 August 2011
"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.
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.
Friday 12 August 2011
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.
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.
Tuesday 9 August 2011
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!
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!
Friday 5 August 2011
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!
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!
Tuesday 2 August 2011
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).
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).
Monday 1 August 2011
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!!!
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!!!
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