7th to 21st April - INTERIM MAINTENANCE - Weeks 12 & 13

7th to 21st April

My treatment at the moment is only every-other-week. which means I have had one Wednesday off and one at the hospital.

Mummy and I are trying to do normal things as much as possible. I go to my groups and the library and I see my  family and play with my little cousin as often as I can. It is especially enjoyable playing with my cousin on a Wednesday, it feels more special doing normal things on a hospital day.

The weather has improved and I especially like helping Grandad on his garden. I have planted lots of flowers in pots and some seeds for funky vegetable like purple carrots. I was hoping to have them for my tea soon but Grandad says they will take a long time to grow and I have been to feed the ducks.

When the weather isn't so nice I play in the house. I make things with Mummy and help Nana with cooking, we've made cup cakes as well as beef cobbler and sponge puddings! 

Since going to Gibraltar on holiday I think and talk about going home much more often than I used to. I miss going to nursery so Mummy and I play schools sometimes it is sort of fun but not as much fun as nursery for real.

I have been going to Sunday School which is fun and Mummy stays with me and I have stories and do drawing and singing.

I can't go to Ducklings at the moment because the are doing some building at the church hall and I'm not allowed in places where there is plaster or cement dust. But I still go to SureStart and We did face painting on ourselves!

When I went to the hospital this week the doctor was happy with my blood and how well I am now, but the medicine they gave me made me not feel well and I had to have a tube in for my nasty medicine.  I also had . I also had my 'Globlins' (IVIG) and this time I had it and stayed in the playroom and painted lots of pictures. I ended up very tired and I was very sick before I got to go home. I had to change all my clothes! Even though I was sick it was a good day at the Doctor's because I have had 2 blood test which are clear of the parvovirus and I only need one more to be totally clear and to stop having 'Globlins' (IVIG). The doctor is so happy with my progress and blood that Mummy and I might be allowed on another holiday to Gibraltar. That makes us all very happy!

Mum Says: Having Alice so well is a joy and participating in groups and meeting people is always good, especially as Alice is missing  out on nursery. having been home  Alice seems more aware of what she is missing and also with less hospital visits she is more aware of being away.  Most days she is well although we do have days where she is very tired and run down. We had established a routine with her medications, bed times etc. And fell back quickly to these once we came back to England. Gareth and I are both coping so well mainly due to the fact that we have so much support from our families especially Alice and I.

31st March to 6th April - INTERIM MAINTENANCE - Week 11

31st March to 6th April

We've had Easter now, it was a good day we were all at home together which was really fun and Mummy's friend came for lunch and her little boy, who is the same age as my big brother Joe. I played chasing them and I had lots of energy to play because I'd eaten lots of chocolate. 

On Monday we had to get up and go to the airport. I did ask if it might be okay for me to stay at home and be ill instead of having to go back to England. Mummy and Daddy want me to get better so I had to get my bag and fly back to England. Lots of people came to the airport to see me and say goodbye and by the time we got to the aeroplane I didn't really mind going. I did get grumpy on the plane but I had a little sleep and woke up much better.

When we got to England Mummy and I got the train to Huddersfield and my Uncle came to collect me from the station. When we phoned Nana and Grandad to tell them we were on our way I shouted 'Nana I'm coming' so loudly I don't think she needed the phone to hear me!

Tuesday was a quiet day, settling back in to my England home ant Nana and Grandad's house and getting ready for the hospital on Wednesday.

My uncles were both away so Nana, Mummy and I got the train to the hospital. It was quiet exciting as I hadn't been there on the train before! My pushchair broke when we just got to the hospital! Lucky it lasted that long! Mummy said that later she would go and get a new one whilst Nana stayed with me. It was a (Immunoglobulin) 'Globlin day'. The doctor had some very exciting news for me when they last tested my blood there was no more parvovirus in it and that means that I am feeling much better and that my blood doesn't keep getting so poorly that I have to have a transfusion. Hurrah!

The rest of my week has been quite quiet. I have helped my Grandad in the garden and I have been to the supermarket, I went to messy church on Friday and learnt all about Easter, which was fun. I did lots of sticking and some singing. Best of all Mummy has taken me to the library and I have borrowed some books, I have to take them back and I got some DVDs too. It is very good. I'm going again next week to choose new books and DVDs. I am trying to watch the films as many times as I can before I have to take them back and I have the stories every night for bed time; I am only borrowing them after all.

Mum Says: It was hard to leave the family again but it had to be done. It was harder because I now know what I'm going back to and Alice isn't as even tempered and easy as she used to be, she is also more clingy and demanding now, totally understandably of course. Whilst she is well and we have time on our own I am working on some of the more diva-ish behaviour. Although there are aspects of the new behaviour we can't do anything about as it is due to the drugs. Like her strange new diet and food cravings, I hope it is the treatment that is causing it! Alice is doing really well now and has energy to spare, the fact that her last blood test was clear of the parvovirus was such a relief, it was obviously a relief to the doctor to as she is now much more relaxed about the possibility of us having a 2 week break in Gibraltar before the intensification starts! ... I am trying not to count the days 4 weeks is a long time for a sick child and a lot can change.

20th March to 30th March

Mum Says: I have had a very busy time taking Alice all over the place visiting everyone we could. All the support we have had from the people in Gibraltar has been overwhelming and I'm sure there are people we should have visited and haven't been able to see!

I was over the moon to be told that we would be able to get home for a while but wasn't sure if it will work to make me more or less home sick (Jury's still out on that one). Getting ready to come to Gibraltar filled me with trepidation when I packed my hand luggage full of Alice's medicines and the thought of taking her so far away from the hospital made me very nervous. Also just seeing people and being around family and friends. having kept myself pretty sane (I think) I wasn't sure if I'd loose it completely and break down (I didn't).

The flight was a nightmare, it is difficult travelling with a child on your own but add steroids to the mix and it could have been a pretty interesting journey without taking into consideration that we may be diverted to Malaga, which we were. I must say Alice voiced her protests at being at the wrong airport loudly and with as much gusto as she could muster!

I can only say that coming home has been a real break and has given me the chance to see people and just have a bit of 'normal'. I have enjoyed seeing people immensely and being with Joe, Gareth and Toni has been a real tonic.

I was able to meet up with a lady that has been in the situation we are currently in with her son and she has gone trough it and come out with a healthy son, 10 years on it gave me a real boost to see her and hope that Gibraltar will be able to look after us during our maintenance period, so I won't have to say in England for 2 years! I was beginning to wonder if I'd ever get home.

I have managed to go out with Gareth for a meal which was very much needed, we had some time to ourselves and could sit down and chat about rubbish and eat good food, just for a couple of hours, we had tried whilst in the UK but Alice ended up in hospital.

I did go out for a quiet drink with a friend which turned into a bit of a session and I can only say 
1. I'm glad that we had Friday free and 
2. I am not as young as I used to be.

I haven't managed to do half of what I wanted but I  was happy to find out that the housework was fairly up to date when I arrived thanks mostly to my daughter Toni. 

I think that the best part of my visit has been seeing Alice and Gareth with permanent grins on their faces. I have loved seeing Joe and Toni and can't wait to get back to them for a longer period of time. I would like to say I'm more rested than before, but I don't think I am having packed so much into our week at home. I am however absolutely determined to bring Alice back healthy and happy.