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

 

 

Finally an Update...

Dear Friends,

 

This has been a long time coming. I think about it everyday and then by the time I can either get to the computer or have not fallen asleep in the late evening another day goes by. So it is now Day 84 tomorrow. Hard to believe. Georgie is doing really well. We missed our big DAY 79 bone marrow aspiration as her blood counts were too low. To be exact her neutrophils were too low and they continue to go up and down. They all have to reach certain levels before they will continue with treatment, be that tests or chemo. So we shall try again tomorrow which means another 7.30am appt and a long wait for a spot on the emergency operating list.

 

We have just spent the last three days and nights in the Variety Club Ward (isolation ward) as she got a temperature and with her low counts they wanted to put her on antibiotics. So we have had a practise run before we begin the Central Nervous System phase of treatment. That will also all depend on the results from the bone marrow tests. She will be receiving very high dose chemo in hospital and then they will flush her system for a few days until her body has cleared its self of the chemo. It will be very interesting to see how Georgie's body handles this next phase.

 

Michael and I are just so proud of how Georgie is handling every aspect of this experience so far. She has her moments when it gets too much for  her but considering what she has had to do so far - the blood tests, the lumbar punctures, the portacath needle being put in and taken out so often, the chemo drugs, other oral medication, mouth washes, the sitting for long periods of time, not being able to go to school on a regular basis, not feeling 100% etc.... I am continually amazed by how brave and positive she is. She still has her little bob which is wonderful and even amazes the doctors that she still has hair and little rosie cheeks most of the time.

 

The rest of the family are hanging in there. I do not know what I would do if Jill was not here to take control at home and look after Charles and Cate. She has been a wonderful support and has not stopped since we arrived. Michael starts full time work tomorrow after his first couple of weeks of trying the part time thing so I am sure that will make the work life easier for him.

 

Cate is enjoying her new school and sounds like she is making some lovely friends. She likes her new teacher and loves wearing a uniform. Georgie has now had four and a half days at school in total and has enjoyed them. We have also enrolled her at the school at Westmead so when we are admitted the teachers will come around and work with her apparently. Shall let you know what happens there.

 

Charles is wonderful and full of energy. Never sits still or rarely. He is being very good about coping with the disappearing mother - less tears each time. I am not sure if I can say the same for the mother. She is trying to find some new energy source and is not feeling so wonderful but we will get there eventually. It has been an amazing 84 days and I think that I am just feeling the strain. Sleeping on lovely single fold out beds in hospital will probably do that to most people.

 

I am putting alot of pressure on Michael to organise an internet connection for me especially with our planned four hospital stays over the next two months so I am hoping not to leave it as long between posts. Better get to bed. Love to you all. Miss you all in Dhaka and Singapore in particular. Have not forgotten you!!! SSxxx

Georgie's First Day at Pymble Public

Just a really quick  hello. The evenings seem to disappear and then I wonder why I am feeling weary in the morning. Michael and I are both getting used to doing the domestics. So instead of emailing I was ironing!! Welcome to life back at home in beautiful sunny Sydney. Anyway, Cate had another great day at Pymble Public today. She has made some nice little friends and so far so good. Georgie has also been really keen to get to school so today was the day. They both looked so cute in their uniforms - sort of grey/blue check with a fine yellow stripe and a bright yellow hat with the wide brim of course. Lucky they both look great in yellow. After a rocky start when she quickly changed her mind upon entering her class room when she realised that we were not following things improved. The Deputy Head rescued us and she took G off and kept updating us throughout the day. Much  to our amazement she lasted the whole day. Not sure how she will be tomorrow but she seemed to have fun and insisted on the teacher giving her homework which the teacher was reluctant to do. Our wonderful oncology nurse consultant went out to the school today to meet with all the admin staff and teachers to brief them so apparently that went very well according to both sides. After much thought and discussion we have decided to put Georgie into Year 1 to take the pressure off so we hope this is the right decision. Cate is very happy with her Year 3 teacher who is new to the school.

 

So after dropping the girls Michael and I spent the rest of the day ticking some things off our list...... new NSW licenses, bit of shopping, bought a car, grocery shopping and then home to Charles who had been entertaining his grandmother all morning.

 

I think we are house hunting again tomorrow....

 

Georgie's nurse came to the house after school to administer her chemo and she will be here by 8am tomorrow so give her the last dose of that drug for the week and take out her needle to the port so she can be free of the tubes and needle until Monday. We are back to Westmead on Monday and we shall see our consultant, Dr Luce so we have been advised to take a packed lunch. It is likely that Georgie will have to have another blood transfusion on Monday so perhaps we shall take dinner as well.

 

Better get to bed.  8am is just around the corner.

Love to you all. I am sorry that some of you are having problems with the blog. I shall consult my technical adviser who had to help me again and see what I can suggest.

Sally

xxxxxxx

 

FINALLY..... AN UPDATE

Hi Everyone - I had hoped to write sooner but the days since we arrived in Sydney have flown. We have been back ten days which is also hard to believe. I am still to unpack my suitcase but the rest of the family are organised. We have only spent two days at Westmead Children's - the first day back to meet some of the doctors and nurses and have an orientation of the Oncology wing and then last Monday for a full day of treatment. It was an interesting day spent sitting in the clinic with many other children and their parents. All the children seemed to have a different type of illness and so no ones treatment is the same. It was fairly confronting and by the end of that long day I felt extremely drained. Georgie did really well and took most of it in her stride. We came home with a large brown paper bag of medicines - chemo drug, antibiotics, mouth washes etc.... and then the oncology nurse has made three house calls to administer her one of her daily doses of chemo using her porta cath. It is fantastic that Westmead have this service which saves us three trips to the hospital in a week for this next phase of treatment. This second phase lasts for 28 days. Daphne and Dianne are the two nurses and they are just wonderful.

Tomorrow we are out there for 7.30am as G has to have a general for a lumbar puncture - chemo to the brain and her other chemo drug. Not sure how long we shall be there. Each time you go they take a blood test to check her levels so we shall see how they are as to when she will have to go out for some more transfusions. So far she is doing very well. She is looking great. Still has alot of hair. Just shows how much she started with as it is everywhere all the time.

We went to the two public schools that we were able to choose between given our current address and we have decided to send the girls to Pymble Public School. Cate starts tomorrow and is so excited. We have bought uniforms and school shoes to great excitment and Georgie is also really wanting to go as well so we shall see how the beginning of the week goes. We are still deciding which class she will go into. Cate will be in Year 3.

We have been car shopping and house hunting...... one much easier than the other. Shall keep you posted there.

It is wonderful to be back with Jill and Dave and to have seen the aunts and uncles and cousins last weekend. We had a lovely play with the Smiths last Saturday afternoon and looking forward to catching up with other friends over the next few weeks.

We have to get our clocks into Sydney time as the bedtimes are alittle out of whack. Late to bed but sleeping in so it does feel like we are on holidays (sort of...).

Michael is enjoying spending time with all of us - Bruiser is keeping us all on our toes. What an understatement!

I am doing fine. Still does not feel like we are back to live but I am sure that will change as some regular activities start up ... school, work...

We are missing our Dhaka "family" and all our buddies in Singapore who all took such wonderful care of us and helped and supported us in so many ways. We so appreciated everything that you all did and feel so fortunate to have such wonderful friends in our lives.

Not sure if this will work but shall try to post then perhaps I will need to get further instructions again... Lots of love Sally

Update from Sydney

The Seymour's left sunny Singapore last Wednesday night and headed home! After 3 1/2 years in Bangladesh, they are finally back in Sydney. Reports are they are all doing well but extremely busy setting themselves up. As you can imagine there is a lot to do! Visiting schools for both girls, buying cars, looking for a home and keeping up with hospital visits.

They are currently staying at Mike's parents' place waiting for furniture to arrive. The best way to contact them is via the blog so keep the messages coming.

Andrea
xx

The Seymour kids

This was taken on Tuesday 2nd March at Tanglin Mall in Singapore. The Seymours loved Cafe Beviamo - especially Georgie and they were there for one last bite before leaving for Australia last night.

Great to see/hear news from the Seymours! Georgie is looking good so I hope the medication will be gentle on her. I know the routine from past experience so I am thinking positive for all of you :) Here in BD life is as usual. Gym, work, home, etc. nothing really exciting, but that is OK. Erik, the ice cream man, had a big concert with his band the No CLUE?s and the Super Mad Cows at the Nordic Club on Thursday night followed by Shams and his band. It was a roaring success with a mad crowd of kids aged 2-13 break dancing in front of the stage and keeping the adults at a healthy distance. Not sure if that is what the club had planned but certainly I think the kids had their best night in Dhaka. Miss McKay, Elliott, Ward, Arestia and Mr Curley came to show their support from AIS/D - more power to them! Apparently there's a new concert planned for May so I guess Dhaka is rocking (well.....)

Take care/marielle

Three Days to Go in Singapore

It is hard to believe that we are only three days away from moving back to Australia to live! We have had a lovely couple of days getting to know each other again and catch up on some sleep after our dreadful Thursday night both in Singapore and in the air for Michael, Cate and Charles. Georgie had treatment on Friday morning and we are off tomorrow morning for the two procedures - bone marrow aspiration and the spinal needle as well as all the chemo drugs. Not sure if they will want to give her anything else. Wait and see. We may also meet Georgie's Sydney doctor tomorrow so that will be wonderful. Michael had an extremely busy five days in Dhaka - lots of hugs (apparently) and not alot of sleep but he survived and made it to the airport Thursday night with two children and a reasonable amount of luggage. He was not totally sure what was in his bags but that was the least of his concerns that night.

We leave after midnight on Wednesday night and arrive at about 11am on Thursday. We will get the children settled and then the three of us will head off to Westmead for orientation and then back the next day to start next phase of treatment.

We shall keep you all posted. Love Sx

Sal and Georgie

Photos

Kate has sent through a couple of recent photos. xx

Today was a lovely day

We had a lovely day together. Georgie had a good nights sleep (and so did I) and after a sleep in we pottered about for the morning. She wrote in her journal while I did some little chores and got organised. We had a lovely lunch with the girls. Just what Sally needed!!! And Kate kindly picked us up and delivered us home so we headed out for a walk later on when it is cooler. We met the Wigan ladies for coffee (and pizza) and Bent, our friend from Bangkok found us at Cafe Bev which was lovely. G and I then pottered around Orchard in between phone calls from Bangladesh. She is very nervous about her next trip to hospital tomorrow morning for another big round of chemo so we have to talk through this often. She is so good with taking her yucky Vit P (pill) but it is a bit of a process three times a day. Shall let you know how we go tomorrow. Sx

Singapore Update

Hello all,

A little news update on the Singapore and Dhaka front.
Lovely Georgie has managed to get control of the bacterial infection with the help of some good antibiotics and plenty of quiet time. The infection was traced back to her nose so it has been a warning of how susceptible she will be to air born bacteria.

I was hoping to send this update with the results of Tuesdays tests but no news as yet. George will be having a one chemo drug treatment this morning and Sally and Mike are hoping that it will be a short visit.

So far the chemo treatments have not had any adverse side effects but it is certianly leaving her very tired and without much energy. She is maintaining a healthy appetite (eating two serves of scambled eggs in one sitting yesterday morning) and keeping herself distracted with drawing and playing some one on one games with Sally and Mike in between big sleeps.

Catie is being very strong as the big sister in residence but aching with the loss of her everyday existence with Sal, Mike and buddy George. Catie and Charle's stand in parents, Sandy and Mark and their daughter Clancy are being absolutely fantastic and our thoughts are with them as they manage their new 5 member family life and create and keep the sunshine in Catie's, Clancy and Charles day. Huge thanks to them for the selfless support and help!!

At this stage the plan is for Mike to fly to Dhaka around the 22 Feb and finish up with the packing in readiness for a final departure on the 25. Mike's last day in Dhaka will involve managing a final hand over/board meeting (joy) and then emotional final farewells, before making his way to the airport with his treasured cargo, Catie and Charles!

Love to all,
Helen xo