Georgie and Giggles

Georgie and Giggles, the Camp Quality mascot in the clinic last Monday week. Immediately after this was taken she went off to have a lumbar puncture and chemo under a general. That was followed by another 6 hours of chemo in the clinic. A very big day!

The following day she was not at all well and so we ended up in emergency and then admitted for 24 hours. Poor little thing was vomiting etc... The doctors did let us out the next evening as the Camp Quality puppet show came to school the following day so we really wanted to be there for that. It was excellent and Georgie really enjoyed it. The timing was very good for Georgie and the children as she is losing her hair (finally) and she has been away from school most of the last few weeks so the puppets explained to the children very clearly using the right language what it is all about and how it effects the lives of their friends......

We had a quiet weekend but when we came into hospital on Monday to start our last big week and a half of chemo, Georgie's blood counts were not good enough to start again. We went home but ended up coming back again that evening with a temp and another infection so we have been here since. We had a lovely long night in emergency. The only benefit of being an oncology patient is that you do not wait in the queue at triage and generally you get your own room as they need to be isolated from the other sick children. However, there were no free beds (rooms) in the hospital so we remained in ED until 3pm the following day. Georgie is improving. She has not had a temp for over 48 hours, the infection is clearing and her mood has improved alot!!! She is starting to eat little bits and knows that she must keep drinking if she wants to go home. The Play Therapist and Margaret, her teacher from the Westmead School both spent some time with her today and she and I have been doing lots of colouring in and even some school work. Busy day!! Sally Thompson came to visit us and brought goodies so that was wonderful especially for me.

Yesterday, Leigh, Michael's big sister and her youngest son, Scott came to visit us which made our day. It really was the best medicine for Georgie and she turned the corner after that. We may get out tomorrow - we have to wait and see what the doctors say.

We are then back on Monday and she is on the GA list again to try to re start chemo again. Her blood results are getting better so it will be good to get that over and done with. Then on to Maintenance. More on that later.

Michael has just arrived for a visit so I shall post this and send some more photos and fill you all in on what has been happening over the last couple of months.

Love to you all. Sxxxx

At long last I am going to try and update blog. I have been trying to work out how I add a heap of photos but we shall start with one. This was taken at home on the 6th of August.

All happy that Dad had arrived home from work - Georgie looking very healthy after finishing her next dose of steriods. (Horrid stuff.)

Hello Again

The 19th of May!!! Gosh that was so long ago. My best intentions have not exactly worked out but once we get settled I hope to be a better blogger!!

So, we are back in hospital and this is our final high dose methotrexate round - the fourth. We had the third one and I opened the computer a few times during that stay but every time I was int erupted . It is amazing how the time just disappears and you don't seem to be doing much. Georgie is doing well. She still looks great and has even managed quite a few days at school. ( 7 school days between our third and fourth hospital stays) She is really enjoying school which is wonderful so I think that coming back into hospital is a rude shock so she has crashed and is not too happy. Considering everything that she has to do - blood tests, generals, chemo, different drugs she is such a brave and strong little girl. (A tall little girl too - the nurses think that she is joking when she tells them how old she is lying stretched out on the bed !)

Georgie will have a break over the next two weeks. We have to come back next Friday for an echo of her heart before she starts the next Protocol then a whole week off - not even the nightly chemo pill at home - then on the 5th of July Protocol II begins with a bone marrow aspiration. We will then become regulars back in clinic for chemo in the treatment room.

She still has her little gold bob which is the talk of most people especially when you are in the Camperdown Ward with all the bald children of various ages. As you would expect that each time we come into hospital to stay she is finding it a little harder to put a smile on her face and her mood is rather flat. The doctors, nurses and other professionals continue to try to get her to smile or interact with them as they know that she is generally very upbeat and cheeky but she makes it quite a challenge. She is also very tired so she is sleeping more during the day - also understandable as our nights (and days) are continually disrupted going to the bathroom.

ON THE HOME FRONT Cate and Charles are both doing ok with out us. Jill is doing an amazing job of being Mum/Grandma to them both and managing all the other household duties. She and Charles still go and do the grocery shopping together which works so far. Charles loves the outing and saying hi to everyone and anyone. Cate went on an excursion to the Maritime Museum this week which she enjoyed. Michael is very busy at Virgin - a little too busy unfortunately but hopefully in the not so distant future things may calm down . Fingers crossed.

We settled on our house last Thursday and the containers arrived at 6.45am on the Friday so it has been go go over the long weekend. I called in some professional help to assist with the unpacking of the kitchen on Sunday. Ann and I worked ten hours straight -unwrapping, washing, drying, putting away... so we got rid of any Dhaka dirt as one friend put it so beautifully! There are still many boxes to go once we get out of hospital. We then have to think about furniture and start looking so we have something to sit on. All in good time.

Our new address is 18 Halcyon Ave Wahroonga NSW 2076. Our new home phone number will be +61 2 9943 0559 (from the 26th of June)

The little cherub is still asleep so I feel I should also make up my little bed next to her and try to grab some sleep as well. Take care all. To those of you in the north - Happy Holidays and keep us posted as to your travels. Love The Seymours

Home Today

Just a quick update. Georgie's methotrexate level (chemo) has come down sufficiently for us to be given the get out of jail card. She is very busy making cards with one of the wonderful volunteers so I have not given her the news as yet. This is the chirpiest that she has been for a few days. The volunteers are so lovely and can make her day. I am not sure if she is going to let Fiona pack up her goodies. I will now pack up all of our belongings ...... I am looking forward to sleeping in a proper bed tonight with no toilet interruptions.

Thank you for all the little messages, emails and facebook comments. We love hearing from all of you. Sxx

Problem solved!

Great photo Sal. Well done. All you needed to do was import it from the computer not the web and click on resize to fit! You were nearly there. mwah

Trying to be clever

I tried to update our opening photo as you can all see but after many attempts I can not work out how to make it smaller. If anyone can explain how to me then please do. You need to scroll across to see Georgie. (Obviously!)

SSxx

hello from Mary

Today I wasn't feeling so good and I had a really big sleep for five hours. When I woke up I felt better. I went for a little walk down the corridor and it was not fun at all. Mum and I played Rummy and I won 100 times then we did some colouring in. I am now waiting to have my pill then I can eat my dinner half an hour later. Mummy just touched my port - naughty mummy. I am in my own room but it is small and hot. I am looking forward to going home hopefully tomorrow. If I do not go home tomorrow Mummy says i will have to take a bath and I am afraid. All my teachers and Cathy the play therapist visited today but I was asleep. Dial-a-Pizza (otherwise known as Dr Luce) called from his car to say he wouldn't make it in to hospital today but I will see him tomorrow. Please write to me. Love Mary, the super model. xx

pl

Georgie and Dr. Luce Dalla-Pozza

This photo was taken last visit. Luce, Georgie's wonderful doctor popped in one evening for a chat and it made her day.

Back in Hospital

I have the best intentions but I am afraid that the days seem to disappear. I am sitting in our room next to a sleeping child. Georgie is not feeling the best today. She has a sore back and is not up to eating or drinking. This is the flattest she has been for a while but it is to be expected. Her chemo which runs for 24 hours finished at 6am this morning. The doctors/nurses told me that each treatment can have different reactions so just take the first round ten days ago as a guide. I also believe that with each of these treatments she could feel worse after each one as she is receiving such a high dose.

So this is my opportunity to bore you all with an update of the Seymour's activities over the last week.....

Georgie did get to school and almost doubled her attendance in one hit. She managed to go on the Friday and then four days last week. They were all full days and she seemed to really enjoy herself. She gave the thumbs up when asked how her day was on Thursday. Georgie and I then came to Clinic on Friday for bloods and to see the doctors for admission on Sunday night.

CCate had a good couple of weeks at school. They had the NAPLAN tests last week for three days so that will be interesting to see how she went. As we have come from a different system it will be handy to see where she is at. The main thing is that she seemed to take it all in her stride and not get too excited about it. We have not yet investigated after school activities or Saturday sport - all in good time but I think it would be good for her to get into something so we shall aim for that for the start of the next term. All in good time!!

Charles has recovered from his fall. He did develop slap cheek which was all new to me. For those of you who like me had no idea what the doctor was talking about it is a viral infection and he came out with a rash over his whole body and as the name suggests his cheeks were rather red. I actually thought that he had some sunburn from being in the car. Silly Sally!! So after I googled it we were all concerned about Georgie but the doctors have told us not to worry. Sure!! Charles is now Jill's supermarket shopping companion. This was a first for Gie(grandma) to take a grandchild shopping but they apparently have their little routine. Charles stands (if you don't mind) in the trolley and waves to people with the one hand. Last week by the time they got to Woolworths he was feeling a little tired so he sat. Jill then told us that this worked well for him because he could wave with both hands! Today is a beautiful wet day in Sydney so grocery shopping will be a great outing for them both. I hope!! (Poor Jill.) Charles just loves having the girls around to play with. As long as he is able to potter around after them he is completely happy.

Michael had another really busy week at work but did finally get to the rugby on Friday night just before the game started so that was good. He mentioned that it brought back memories from a past life when we used to go together. Charles and I had a good week. We caught up with Josie and Ashley for a play one morning at a park which will be close to our new home and we went to a play group at church on the Tuesday. It is a new group so once the numbers grow it will be even better. The children's minister at church is running it so she organises all the activities so there is some structure but at the same time it is very relaxed. It is in the house opposite church so we play in the backyard and it all feels like being in someones home.

Thursday was my birthday and Charles and I had a lovely lunch with Michael. We picked him up from a meeting at Optus and drove to Kirribilli. We had lunch at a little Italian cafe near the bridge and then we had a play in the park. That night I had dinner with some of my girlfriends and Helen, my sister which was such a lovely night. It was a real treat to be able to do that. I can't forget my surprise afternoon tea (chocolate cake) with the children and Jill and Dave as well. However, my real celebration with the family was lunch on Saturday with our family and Helen. The six of us had a yummy lunch in Roseville and run around. I would of loved to stay home that night (ever the party girl) but I agreed to go to the Mother's Night fund raiser at Pymble Public. 160 women in the school hall for dinner, shopping, auctions, dancing and singing. an interesting night - easier if you know people but you have to start somewhere. I met some nice Mums on my table. A couple have children in Georgie's class.

And here we are back in Westmead. I have rambled on long enough. I will really try to do the short sweet thing more often but I do say that and it doesn't happen..... She is still asleep! The best thing for her at the moment. We love to hear from all of you and we would love to hear what you are up to as well, so do send us an email. Lots of love Sx

Home Again!

Thank you to all of you who have sent us little emails/facebook messages/text messages. It is lovely to receive them and it does help to know that we have so much positive thinking and prayers coming our way. We all really appreciate them.

 

George had a positive ph level that was below what she needed it to be to be allowed to come home yesterday so we packed up and finally got home around 2pm. Charles was bumbling about happily with his chin bandaged so no drama there. Cate enjoyed the cross country. Jill and Charles went down to cheer her on and Jill said that she did so well. She ran the whole way (2km) and was quite exhausted at the finish line. It was a shame that I couldn't be there but I will next year.

 

Georgie was dressed for school this morning but as we were leaving she went very pale so back to bed. She had a good sleep and was much chirpier this afternoon. Can't say the same about her mother. Hopefully, Georgie may get a few school days in a row before we go back next Friday to prepare to go into hospital again on the 16th of May for her next lumbar puncture and second round of the high dose chemo.

 

Take care all. Off to bed for me. Sxx

End of Day Two at Westmead

I finally have a wireless connection - THANK YOU Michael!!!  Georgie has now started Protocol II which is the Central Nervous System part of her treatment. It entails a number of things as you would expect but it all revolves around four admissions over the two months for 3 to 5 plus days depending on how her system can deal with the chemo. She is having very high dose chemo over a 24 hour period and then she is on double maintenance fluids until the doctors are happy with the ph levels etc... Everything understand all of that. I am learning (or at least trying to) all sorts of things everyday. Some things that I would prefer not to know but that is the nature of the beast. She is doing very well so far and the doctors are pleased with how she is handling this chemo so far.

 

We are in the Camperdown Ward which is what the oncology ward is called at Westmead. We are sharing a room with Denis, three and a half year old little boy from Korea. They don't have a lot of English but they  do have lots of visitors!! G is plugged in to her DVD player and I think that I should have the IPod in!! Hopefully Michael is able to drag himself away from work and able to visit us this evening. It will be good to bring him up to speed and for him to see where we are and how it all works when you are in the ward.

 

Yesterday Georgie had the chemo hooked up and then luckily there was a 10 minute free slot in the clinic for us to rush around with 5 mins warning so they could give her a GA to give her a lumbar puncture and also intra thcal chemo to the spinal cord. As she has to fast it would of been a really long day if we hadn't run. We had a quiet afternoon in our room doing craft/colouring in/movies/tv. In the morning she had a visit from one of the lovely "pink ladies" (volunteers) and a Yr 10 girl on work experience. G taught her how to play rummy while I took the opportunity to go and have a shower. The play therapist came and dropped off paints and other craft goodies which she used and they are now up on the walls of her room. Margaret, one of the teachers from the Westmead School also came and they did a poster together all about G.

 

I sleep on an arm chair that opens out into a little bed (not big enough for Michael) but fine for me. Typical hospital we are up and down throughout the night. Busy morning again today with visits from Giggles (large puppet on a trike) who is from Camp Quality who visits Camperdown ward each Tuesday, then Cathy, the play therapist who brought a special doll for G to play with. She comes with the whole medical kit and different hair lengths etc so she is busy playing with her now. She has called her Millie. Then we had Margaret, the teacher from the hospital and then later in the day, Valerie from Back on Track which is another support group who specially look after oncology patients. They are teachers who liaise with G's own teacher at Pymble Public. It is busy, busy, busy. She was also able to leave the ward and go to the Starlight Room across the hall for a little while. Georgie helped paint a sign which will be used on the Weather spots on the Today show this Friday in Martin Place in the city. It is Starlight Day on the 7th of May. The highlight of her day was a visit from Dr. Luce who she is very fond of. He has the most wonderful manner with all of us and they had a lovely chat. We may leave tomorrow or the following day depending on her counts and ph levels???

 

News from the home front sounds good. Jill is doing an amazing job. Apparently she and Charles went grocery shopping again today and then Sarah, lovely uni student has spent the last two afternoons helping Jill. Taking Cate and Charles to the park and helping with homework, dinner and baths. Cate is running in her cross country tomorrow so that is a shame that we are not able to be there but Jill and Charles are going to be there to support her. She is rather excited about it. Her very first!! My sister, Helen has gone up to Pymble tonight to see the children which Cate will really enjoy and that way Jill can go to Prayer group and Michael can come and visit us.

 

So that is all from Westmead. Hope you are all well. Look forward to hearing all your news too. Sxxxx

Counts went UP!!!

We had a good day at Westmead on Tuesday. After they found her blood which apparently went missing for a while down the shoot, the doctor handed me her counts on a piece of paper as we were on our way up to the main operating theatres to do the bone marrow aspiration - our BIG Day 79 test (just afew days later). Her counts had jumped up so high which was amazing and wonderful. I don't think anyone can work out just how it all works. The procedure went well. Georgie was very relaxed about the whole thing. She couldn't stop giggling at how funny her Mum looked in my over sized full length blue gown, really big shower cap and shoe covers!!!  Attractive!!  Her port was still accessed so they gave her a lovely white medicine into the port and she was asleep within seconds. All very easy. Half an hour later (and a much needed coffee) I was back up in recovery as she woke up slowly. She was alittle confused that she was awake and should of been asleep so they could do the procedure. All she wanted to do was eat once we were back in the Oncology clinic.

 

We hopefully get the results tommorrow when we go back to see the doctors and do our paperwork for admission on Sunday if there is a bed available otherwise we wait a day or two until one is available. She will be hooked up to fluids all night and then start chemo on Monday morning and have a lumbar puncture on Monday sometime. She will be receiving very high dose methotrexate as well as continuing with her nightly chemo pill we take at home. It will depend how quickly her body gets rid of the drugs as to how long we will be in hospital.

 

Cate and Georgie have had a great couple of days at school. As you watch Georgie charging around the school grounds with her little friends it is hard to believe that she has ALL and must be quite hard for the children to understand as well. One of the oncology nurses and one of the teachers with the Back on Track program from the hospital went out to school again and met with her teacher so that they can work together to make sure that we try to stay on top of the school work. The support from the various professionals at Westmead and especially to do with the oncology unit is wonderful. While she is admitted the teachers will apparently come to her room to do abit of work with her each day so it will be interesting to see how it all works. I am not sure I am up to a week in hospital but ....

 

Some of our beautiful Sydney friends are all cooking to make sure that G and I eat very well out there which is fantastic as I just seem to run out of time each day to do all that I would like to do. Charles and I went to the shops today to buy some essentials for everyone. The Seymours are certainly going to feel this winter so everyone got singlets!!! I am constantly worrying about people catching chills and then I look at Charles and he is probably over heating.

 

Off to bed as the eyes are closing ..... shall write again soon. Love to all Sxx