Adelle is laid to rest in the Seychelles

Our little Angel was laid to rest in the Seychelles yesterday. She had a beautiful vigil, funeral and burial. She is even sophisticated in death as she is buried in a beautiful spot in the children cemetery overlooking the ocean and some islands. Her relatives were very grateful that we brought her to say their goodbyes. She is now resting in peace.

We wish to extend our sincerest gratitude to all the special people who were there for our sweet Adelle during her illness and even after she left us. We decided to keep her prognosis of 12 to 18 months from Diffuse Intrinsic Pontine Glioma (DIPG) private for her protection and this has helped her enjoy the most out of school, her friends and life till the end.  Normality for her was school, mum and dad working during the day, doting on her after school and on weekends and this we tried our best to maintain.

Your unending compassion and support, prayers, contributions, visits, and most of all, your time, softened the pain of the separation and made it more bearable. Special thanks to Kate, Jodie, Jasmine and Debbie and other Year 1 G parents, The Early Childhood Staff especially Louise, Kath, Tran, Kerry, Denise and Jocelyn, Nikki Bourlet, other GMAS staff members and management,  music staff and P&F, Principe family, Agnes, Jackson family, and Princess Margaret Hospital, Charles Gairdner Hospital, Silverchain Busselton, Surgery 82, Busselton Hospital, Father Earle, the Catholic Priests and Parishioners, the rosary girls who prayed ardently for her every Monday, all my fellow Seychellois in Australia and the Busselton community. We will always remember what you did for our little girl. May God bless you all.

Adelle Sleeps With the Angels Now

3rd November 2013

It is with deepest regret that I announce the passing away of our daughter Adelle Francoise Soopramanian at 6.20 am today. She suffered a very long seizure yesterday afternoon. Dr Gavin, the doctor on call from our family surgery was extremely fast to get to our house. We then took her to the hospital where the medication could be administered more effectively as she didn't seem to be absorbing it orally. 

She passed away without pain and peacefully.

We will be holding Adelle's memorial mass at Our Lady of the Bay church, College Avenue, Busselton on Saturday 9th November at 11 am. You are welcome to wear our little princess's  favourite color pink or rainbow. You are also welcome to send flowers but Ben and I have have decided that it would be nice to donate the money that u would spend on flowers to www.makeawish.org.au for they were amazing in organizing Adelle's trip to dreamworlds, sea world and Australia zoo in Queensland early this year. 

She will be laid to rest with her relatives in the Seychelles next week. I will send more detailed information  on this soon.

We would also like to thank you for your kind messages. We are very blessed to have wonderful friends for support in this difficult time.

 Ben and I are dragging ourselves around but doing our best to give our little sweet sweet a very good goodbye that she deserves.

You can also write an e-tribute of her including some good memories you've had with her and uploading a photo if you wish at www.barrettfunerals.com.au. 

Adelle Francoise Soopramanian

12th June 2007 to 3rd November 2013

Rest in peace our little one.

Our little Adelle passed away this morning.
She's with the angels now
Let us all pray for her.

ADELLE'S UPDATE

Hello all

Not sure where to start really,

Lets talk about the ups. On Saturday we had a visit from Janet who has been babysitting for us when required for the past two weeks and Ms Leyden who read her a beautiful story. She absolutely enjoyed every minute with her teacher. then later she wanted  to feed the ducks with bread and then do some Halloween shopping. so we had a nice little picnic by the river and later enjoyed choosing witches costume. 

On Sunday she went to Sunday school like usual and was the first time we took her in her wheel chair and she enjoyed the activities and story. we also had father Francis bless a prayer quilt that the ladies of the rosary got for her. Thank you Maura for organising the quilt and we are very grateful to everyone who has made a little prayer for her. the beautiful quilt was hand made by a few ladies in the Dunsborough Anglican church. ln the afternoon we had a nap and then went to the beach.

On Monday she was very keen to go to school. Ben took her to school for about an hour. we also had a visit from her teacher Ms Leyden that afternoon and brought with her some work and painting book. She was also very keen to go to school on Tuesday and this time she spent over two hours. She got to cook green eggs and ham (from Dr Seuss book) with Mrs Peters and she actually enjoyed eating them. i went over to her class during fruit time and she was enjoying each minute. she wanted to do monkey bars which Mrs Green made sure she got to be a monkey. it was beautiful and heartbreaking at the same time to watch how determined she was.

 

On Wednesday she was just too tired and spent the whole day in bed. Today she woke just as  i was about to live for work and we had a chat which she was clear enough to understand. however later i rushed home later to find her not able to communicate, barely able to move or sit up, drooling and unable to swallow her saliva. Ben had phoned silver chained and they had already been before i got home. they had informed him that this was a the sign of the inevitable coming.

the sad thing is that today she so much wanted to go trick or treat. so we dressed her up in her witch costume and Ben hid the treats around the house. then we placed her in her wheelchair and went looking for the treats. we managed to get a few priceless smiles from her which meant a lot to us. after that she manage to chew on a marshmallow and then went to sleep wrapped in her prayer quilt.

 

Our silverchain nurse came around for the second time and i had a chance to talk with her. Truthfully speaking we do not have much time with my sweet sweet. It may be hours, days or a week or two. i am hoping she wakes up tomorrow as bubbly and determined as she was on Tuesday. Let's all pray.

ADELLE'S UPDATE

17th October 2013

Hello everyone

Just a quick update as it has been a quite busy few days a after starting work.

Adelle has been having a few not so good days where she would be lethargic and sleep or just watch movies and more of good days where she would be fairly active and wanting to walk around the house and keep busy in her play room. Ben and i have to walk behind her in case she false over as she is quite wobbly. sometimes if she figured, she is too wobbly she would walk on fours instead. She has not complained of headaches  recently as we are giving her pain killers on a regular basis. Her appetite is on and off and she's figured that the thickened fluid prevents her from coughing when drinking. So she's happy with us thickening all her fluids and she would even help me dissolve the thickener in the water jug.

Yesterday she wanted to ride her bike. She managed to cycle one lap around our block. I'm so proud of her determination.

On wednesday she wanted to put braids in her hair. after i platted her hair she showed new a personality. she asked me if she can sleep by herself in her room that night and wanted to speak to Anahera on the phone to tell her about the hair.  She took the phone away from me and walked around the house while chatting (which i tend to do). It's amazing how a new hairdo boost our confidence level.

On Friday Anahera kept her company for the day and they had a good quiet play and watched movies. We had more visitors from perth, our local parish and from our school on the weekend. Thank you Nikki, Maura and the Sopha family for coming and spoiling her. Hannah the teddy has now a new brother, Lucky.

Our local parish Rosary group organised for a special prayer quilt to be made just for her. Thank you Maura and all the rosary girls for the fantastic idea.  I will send pictures once i get the quilt blessed.

On tuesday she was excited for the first day back at school and woke up 6 in the morning and wanted to get ready. She had a wonderful morning at school. The school has now allocated a teacher assistant to her when she is at school which is just fantastic.

i am now back at work full time while Ben is doing full time carer. the past two days back at work has not been easy and i had to re-teach myself how to switch on "work mode" which i was managing very well last term. i am sure it will come back to me, maybe i am still in holiday mode.


Thank you to everybody who has been emailing, calling and messaging to check how she's doing. i really appreciate that you all care and wishing her well.

THE TIMELINE

8th October 2013

The past week has had many ups and a few downs.

On Wednesday the three of us went to watch planes at the movies. Adelle was very excited especially with buying the pop corn and slushy. However she fell asleep about 20 minutes into the movie. At the end of the movie she was re-energized and wanted to play the video games in the cinema lounge which she enjoyed.

That night during bedtime story, she asked me to tell her a story about a little girl who had a tumor. she caught me by surprise, but i managed to tell her story but using a different name which she came up with. As I was telling the story she would help me with the story line. I was relieved to have Ben next to me at the time to help out and finish the story and she was quite satisfied.

On Thursday I phoned PMH in regards to getting a shower chair to help me with Adelle in the shower as being wobbly was getting very tricky as well as I was hurting my back with holding her and applying soap. we received a small shower and toilet chair later that day from silverchain while Ranita from PMH was organizing to courier a kids one to our house. I was so relieved that we got them very fast and Adelle is now enjoying doing her shower herself mostly and not have to be wobbly. Yesterday the courier arrived with the kids version.

On the weekend Shirley and her two daughters, Stephie and Sheera visited us from Moora and Jacqueline and Louis from bunbury joined us as well. Adelle got spoilt with presents and was happy to have company however she would resort to lying down after a few minutes play. Louis has brought her some movies that she's enjoying very much, especially Aladin which she's watched four times now.  Daddy had promised in doing cupcake making so on friday afternoon everybody was decorating their cupcakes. Adelle mostly licked the icing off the spoon. Lol.

On saturday she was quite lethargic and stayed under the blanky most of the day. On sunday we all went to church. Ben had organised a mass for Adelle and I was glad we had friends with us for the mass.  Adelle was more active compared to yesterday, so after church we went to Margaret River and visited the chocolate factory, Rose garden at voyager estate which she enjoyed smelling the roses and made a wish at the wishing fountain, then we were off to the beach. she loved playing in the sand with Sheera. Sheera has been amazingly careful with Adelle and made sure she's well taken care of. It was just a wonderful day.

Yesterday she slept most of the day. She woke up for about an hour in the morning then dozed off again. Then she woke up at 1 pm in time for her visitors , Clancy from her class, year 1G and his two little brothers. She made the effort to walk to the door  (which is now very tricky) for her visitors . They had made some homemade juice for adelle and also brought some "Aussie Animal" cards which are very famous among kids. After a few minutes play in the play room, she resorted to watching kung fu panda on the couch with her friends. She fell asleep soon after clancy left until 7.30pm. She woke up wanting a bath, then had a light dinner and fell asleep again.

In general, we are managing the headaches with pain killers and they are set off when she does lots of movements. we are also managing the neausia with medication when required. She has not vomited since early last week. She's been sleeping the whole night for the past few days without waking up with a headache. The constipation is also being managed and I am sure she's comfy where this issue is concerned.


Thank you to everyone who has visited over the past few days. She has enjoyed the attention and would light up each time I tell her a visitor is coming.

09th October 2013

After the sleep in day on monday (which i was getting worried), Adelle was bright and bubble yesterday and today. yesterday she did not take any naps but resorted to watching movie on the couch. walking around is getting more tricky and as she is very determined she would sometimes crawl on four to get where she wants, mostly the pantry, LOL. otherwise i would carry her around the house and not that I am complaining but she is quite heavy.

Her apetite is ok, sometimes she would eat her dinner and sometimes not. Today she requested nuggets and ice cream at mckers for lunch which she enjoyed very much. We are also thickening her drinks as she tends to cough with normal fluid. Her drooling has increased and her right arm  function is also decreasing. i only remember two weeks ago she was writing fairly well, but now she avoids writing all together.

This morning she went to Grace's house from her year 1 class for paper making. She had fun putting the pulp in the blender and later using the mesh to make the paper. She enjoyed picking up petals from the garden to add to the paper mix. She was also determine to walk around the garden by herself and play on the swing, bus rail and trampoline. with the latter she could not jump but laid flat on the trampoline while Grace and Chris jumped, what fun.

When we got home, I thought she would have ran out of energy but she surprised me with wanting to make a painting. so Ben set up the playroom for painting and they got busy (picture a bit blurry). Later this afternoon, we had a visit from father Nick, our parish priest and she fell asleep while we were chatting. I'm sure she is refueling up for another beautiful day tomorrow.

THE TIMELINE

15th August 2013

The past two weeks have gone amazingly fast.

Adelle is still doing amazingly well. The prayers being done by all of us, is in working well. She is still enjoying full time school, full of energy, bubbly, amazing appetite (including McDonalds chicken nugget and ice cream everyday after school) and cheeky at times. She still enjoys coming with me netball training afterschool on tuesdays as well as coaching the matches on saturdays. She is our teams little mascot and the girls just adores her. Two Saturdays ago, she got to take the player of the week trophy home as everyone played an excellent match.

 Sometime during the past two weeks was my bday. As it was a week day we went for dinner at a local Chinese restaurant. Adelle got to choose her favourite Chinese food, noodles. The Saturday she had a birthday party after netball of one of her classmates. She had a wonderful time, and was the lucky winner for pass the parcel game. She collected a handful number of sweets from the piñata just for daddy when we got home. Later that day daddy surprised us with mummy’s belated birthday cake and more presents. (The best present was the book Mortal Instrument: City of bones, which now unfortunately I am hooked on, I finished it in a few days and now looking for the second book). Adelle took charge of laying out the table and birthday cake cutting routine.  We all had a fun afternoon.

Last Thursday I was parent helper in her classroom and helped Ms Leyden, her teacher check and help the pupils with their work. It was amazing how well all the students were working. They had four tasks to complete and everybody was busy working at their own pace. Adelle was proud showing me her work and how well behaved she is.

Last weekend the three of us got to enjoy a weekend away voucher at the Regency holiday apartment in Dounsborough.  We enjoyed some quiet time together, cuddling, colouring in,  movies, playing hide and seek and best of all pillow fight.  There was also a big spa that she enjoyed spending for about an hour with her dad. She was very proud to be able to complete a 100 piece puzzle with the minimum help from me. On Saturday afternoon she went to the beach with dad, but it was too cold to stay long. It was a shame Sunday came and we had to drive back home.

Tuesday she received a merit certificate in the school assembly for being a wonderful worker, and a friend to everyone, with clever ideas and producing wonderful work. She proudly jogged up the stage to get her certificate before standing in the line with all the other recipients. I was a proud mum video recording yippee.  When she got into my office afterschool she proudly went around the room showing my colleagues her certificate.

Yesterday was very exciting day as she went to the “Room on the Broom” excursion in Bunbury with her class.  She had a wonderful time and her wonderful teachers kept me posted hourly on how she was doing as i was quite on edge with her being far from both Ben and i. after school she had lots of stories to tell us about the show and how much fun she had at the park afterwards.

Happy Birthday Mummy

27th August 2013

Another week gone already. If only i could slow down the time. 

Adelle wonderfully bounced back after she caught the coup cough last Sunday. Like usual, after church she wanted to go shopping for a new dress as I had organised for us to go for a picinic in the park later that afternoon. However while she was trying on her skirt, she started to cough nonstop to the point of having difficulty breathing. 

I phoned pmh who told me to get her to Busselton Hospital immediately. The poor thing was still coughing and would not stop.

We rushed her to emergency and very quickly a doctor looking at her. He informed us that the cough is the croup and an onset of asthma as well. We have not not had any issues with asthma since we were in Darwin last year and here it is again. So she was given some steroid for the cough and back on the ventolin. The steroid seemed to work immediately as the cough subsided quite quickly. We were told to keep her in bed for three days so our picnic plans went out of the window or at least I thought it did.

Once back at home she was feeling herself again and she decided to have the picnic mat in her room and had her picnic there with her teddies instead. too clever. Later on after lunch we snuggled the three of us with two movies. That morning had been a real scare.

Ben and I took turns in staying with her at home from Monday to Wednesday. by Wednesday she was just plain bored and was nagging me if she can go to school tommorrow. By then the cough had disappeared. so thursday and friday she went back to school. however it was at our own risk as although she was better, other kids in her class had other bugs as well. well it is the time of the year anyway where almost everybody have runny nose or something. But we cannot keep her cooped up in the house and prevent her from being a normal six year old either. these are very tough decisions.

on the weekend we went to mandurah for "aunty Georgette" 50th birthday. Ben had been suffering with the flue since Friday so he stayed home. After netball we went shopping for a present and card before the two of us drove up to Mandurah. she had a wonderful time and it was amazing how she had grown attached to Jimmy, Georgette's husband she was. Every now and then she would run and give him a hug. so cute. It was also good theraphy for me to meet with friends and talk  and laugh especially on the morning after the party. 

Later on Sunday we drove back home and on the way we went shopping for fruits and veggies at mandurah famous "spud shed". We bought lots of grapes which she enjoys and some other fruits which she chose all by herself. we got home at about 6pm and she was so excited to see her dad who was feeling much better. unfortunately i was starting to feel rotten and had to get some hay fever medicine from the pharmacy. as i said it is the time of the year for catching "bugs".

yesterday she was very excited to go to school. normally i keep her in my office until 8.30am and then she walks accross to her classroom where i can see and watch her from where my desk is, as she feels she is too big for mum to walk her to her class. however this morning she was too excited to go her class and kept nagging me, "mum is it time to go now'  at least about ten times. Finally when I said ok, she was skipping out of the office with her backpack and almost forgot to give me my goodbye kiss. We had high school sports carnival on and at some point in the morning Ben came to me and said Adelle was upset and crying and he is taking her home. I was taken by surprise. I quickly checked my mobile, and I had a missed call from one of her teacher. there I was in the middle of recording an event and all sorts of things were going through my head. Anyway I manage to catch the two of them just as they were leaving and she had stop crying and was upset about something that happened in class. I was relieved that it did not look like anything health related.

Later Adelle and Ben came to pick me up at school and she was her normal self, happy and we went shopping at Coles. I told her that i needed four things and she made sure that i follow her to were the items were. she looked so cute doing that, "Mum follow me I tell you, I know where it is,  hurry up Mum". that night she wanted to help me cook, so as soon as we got home she put on her Dora masterchef apron and we had a wonderful time in the kitchen just the two of us. She made the salad, and put the kebabs in the oven. she was so proud of herself and even had seconds.

 

More updates later

06th September 2013

Subject: Adelle's 28th update

After the croop cough episode in the previous update, the nasty cough came back last Thursday night. I took her to the Dr Lamb the following morning, our family doctor this time and he was happy to see her as the last time he saw adelle was just before we left for the holiday trip. Adelle had made him a colouring in "my little pony' picture that he keeps on his wall. He diagnosed the croop and issued prescription for steroids and added anti-biotic. So we had to have another four days in bed. Howeverm, on Saturday the cough got worse and worse. Honey and lemon did not do much help as it used to. Sunday there was slight improvement,  but by Monday fortunately it was almost completely gone. Ben stayed home with her on Monday and when i got home from work she wanted to go to the park. Hannah the Teddy was sat nicely in the tricycle basket and off to the park we went. She rode alongside Ben while i took the opportunity to do some walking exercise.

Sunday, was father's day. On the morning she helped me make a special breakfast for her daddy and she gave Ben a torch which she had from the school's P&F stall and two cards all made and written by herself. In a section of one of the card, there was a question about how old is your dad. She wrote 59 years old. that was a tickler which i must remind you guys to make sure your kids know your age otherwise you are ancient. She also made another father's day card at sunday school during mass. 

Last Tuesday, Ben and I had a meeting with Adelle's teacher Louise. She informed us that Adelle has been having difficulties with coping with the general work that she use to do with ease. This include following instructions systenatically of what to do, being in her own world (eg. talking out of context about Hannah the teddy), being incoherent in her descriptions of stories. She is also noise and emotionally sensitive. The latter, Ben and i had also noticed at home. She would be very short tempered with us. Her speech is getting harder to understand at times and she's getting very frustrated with us when it take us time to figure out what she means. As for the noise she does not ask us to turn up the volume in the car anymore for her to sing "try and try" at the top of her voice like she would normally do.  Louise also informed us that it would be best to have an educational assistant (EA) just for Adelle during the day, to help out and make her day more wonderful. We were lucky to have a volunteer EA, Jannet, to come in on certain days to help out. Ben met with her after school during pick up and they had a chat. 

This meeting led us to make arrangements with the school principal, Ted, for us to reduce the amount of hours that she spend at school. She is now on half days, tuesdays and thursdays until we need to reduce this further and then stop completely. She came with me to the meeting and waited for me quietly in the reception. After the meeting Ted gave her a minty, she was very happy that the principal has given her the minty that she ate it which she would normally hand to me. (she's not into mints or so i thought...). The next day at the video shop she got me to buy a packet of the same type of minty. (Girls!!). 

On Tuesday morning (this week) she was not very happy when i told her i was going to pick her up at lunch time. She had tears and i had to bribe her with getting movies at the video shop. after lunch however when i walked into her classroom she was happy packing her school bag and ready to go. woohoo!!!!  So off to the video shop we went and she got two movies for herself and convinced me to get another one for Hannah. (How can i refuse Hannah, LOL). We had a quiet afternoon watching Dora and the winks and at the same time we did some collage.

On Thursday she had a wonderful half day. She had made a solar system crown with Louise as a model to show to the class. Her classmates were very impressed and one of them called her the "queen of the solar system" (too cute). At recess she proudly wore her crown around the playground while she played chasey with her friends. Unfortunately i did not have my camera with me. 

We hope that she continues to enjoy what she loves most, i.e school for as long as she can. Healthwise (relating to the tumor), in addition to what i mentioned above, she is doing ok. not great but ok. the slight dragging of her right leg is back. Her left eye would sometimes turn slightly inward. Her colouring in skills is slowly starting to go out of the window but her handwriting is still fairly good. these were some of the symptoms that got worse and eventually led to her diagnosis last year. 

more updates soon, and i'll try to be more frequent (cross finger LOL)

09th September 2013

Friday was an exciting day at school. Adelle was reading her prayers in the early childhood chapel. I manage to get one of my colleague Phil to cover my class for 15 minutes so that I could attend her chapel. Her class had made prayers to give thanks and welcome spring. She read hers slowly and beautifully. She looked so cute and like usual I had to fight my tears off.

Saturday she agreed to go shopping for her friend Abbie, birthday present in Bunbury with Ben while I do the normal Saturday chores. She later came home excited to show me what she had bought. I suppose all of us female must admit what fun it is to shop with dad as we can twist them around our little fingers. So now the challenge was selecting what to wear for Abbie's birthday. 

Sunday like usual she attended Sunday school during mass. Part of her attire was her solar system crown that she had made with Mrs Leyden earlier that week. She takes her queen of the solar system duty seriously. LOL. So during the presentation of her work in mass she was the only child with a crown, i wonder what the congregation was thinking about!!!!   As soon as we got home from church she wanted to get going to Abbie's bday party but we had an hour to kill, so she sat down patiently watching garfield after telling me " mum you take for ever" over and over.

We made it to Abbie's house on time.  Then off to Mcdonald for lunch and play, followed by singing happy bday and eating some beautiful home-made cupcakes. Then they went to Bunbury famous Taffy's lolly factory. She had fun watching the elder man working at the machine that wraps the sweets. He was very good with the kids and handed them freshly wrapped lolly . i was in heaven with all the chocolate around and smell of sweets in the air. i tried the chilli chocolate and OMG what a feeling!!!!  The kids had some ice cream on the boardwalk and enjoyed watching the locals do crabbing. It was just a beautiful spring day to be outdoor.

Then off to the cinema to watch the classic wizard of oz in 3D. the kids took a row all for themselves while us parents sat the next row infront. I suppose Adelle felt good to be treated as grown ups.  but 10 minutes through the movie, at the the wicked green witch scene, she got scared and moved on my lap and then enjoyed the rest of the movie.

We got home in good spirit but while i was getting dinner ready and chatting to mum on the phone, she started to cough again, non stop, so i gave her ventolin which helped. However later just before bedtime she complained of  a headache. I gave her some paracetamol and that help. During the night just before midnight she started coughing again, i gave her another two puffs of ventolin and she went back to sleep. Her asthma seems to be on and off now.

16th September 2013

Subject: Adelle's 30th update

Lots of ups and down this past few days. lets start with the downs. 

Adelle speed of detoriation is what seems to me to be increasing. two weeks ago i mentioned her colouring in skills was getting out of the window, this week the hand writing seems to start getting affected. She is extra sensitive towards the afternoon and on Friday i had to collect her early as she was not coping well in class. the headaches are constant and she complains about them once or twice a day, but the paracetamol is very effective and she will resume her normal self. Her speech is getting slurrer towards the end of the day and sometimes she gets frustrated when we cannot make out what she's trying to say. we are in the procedure of reducing her school hours to half-days everyday until the end of term (2 more weeks unless something else crops up).

the ups now. Yesterday was a beautiful spring day and after church, Adelle and I decided to go on a picnic that i have been promising her for a while, but the weather has been lousy. I gave her a choice to choose two friends to come with us and after a long reflection she chose Abbie (but lived to far), then taysha-Belle and Mikaela S. I gave their mums a call and they were excited for the day. After she helped me pack up the picnic basket and Hannah of course, we were off to pick up the two girls. we got some ice-cream at mckers to eat on drive to Yallingup Maze.

upon arrival the girls went on the bouncing castles while i set up our picnic bench. they then had a great time on the playground. We ordered some fish and chips for lunch and while waiting we went in the small "jungle" playground. I had to help Adelle with jumping from one log to the next and climbing the trees as she is now finding it tricky to get her balance. The girls found a caterpillar and spend some time patting and chatting to it. 

We then had lunch followed by a trip to the maze. We took to easy task i.e finding tower 1 and 2. after a few dead ends and laughs and swapping of captains/leader we made it tower 2 first then tower 1. the most tricky part was finding our way out of the maze but we finally made it. the girls went to play on the many indoor puzzles that was set up inside the cafe. that allowed me to sit down and cool off. it's amazing how much energy kids have to burn. However soon after Adelle complained of having a headache. it was only 2 0'clock then and she did not want to end the fun but i had left her medicine at home. so to solve the problem and keep her happy we went back home for the medicine and then to the movies to watch the Smurf instead of driving back to the Maze. 

the girls enjoyed popcorn and skittles while enjoying every moment of the movie. Adelle headache was gone and she was one of the loudest kids laughing. after the movie all three girls wanted to play on the video games in the cinema lounge. we enjoyed a few rounds before i drove them back home. By the time Adelle and I got home, we were both knackered but had one of the best mummy and daughter day....

19th September 2013

On Tuesday we had a chat with Ms Leyden, her teacher and later the principle with reducing the hours as she is losing her confidence, easily irritated. so we agreed that as of wednesday we will bring her in the mornings and pick her up at recess for the next couple of days till the end of term. At recess i collected her from her class and brought her to my class as i had invited the netball girls for a small end of season gathering and they were happy to see Adelle our little mascot. she absolutely enjoyed the little party and wanted seconds of the mud cake. After lunch i picked her up to go home and as we entered my office she complained of a headache. so I gave her some paracetamol that i keep in the office fridge for these occasions.



However yesterday was one of those days that i was dreading to happen. Adelle woke up  at her usual time in the morning for school. it was going to be an exciting day as she was happy with spending two hours at school instead of more. She woke telling me that i have three eyes and two noses. As i was giving her her shower she told me she was dizzy and true enough she was swaying from side to side and i had to keep her steady. The headaches were back as well and they now more frequent.

Ben stayed with her and I drove off to work. as i was getting Ben's relief organised i met with Phil  (relief cordinator) who told me to go back home. I was so relieved and broke down as this was a new phase that i had not sat down to put my head around it yet. No wonder they say this tumor DIPG is very agressive.

So back home i phoned PMH and spoke with Suzanne the oncology cordinating nurse. She was very helpful and told me that she'll contact silverchain and speak to Dr Phillips (adelle's oncologist) and get back to me. i hope that i'm getting these events in the right order but anyway Judy from Silverchain came to our house later that morning and we had a chat about how to keep Adelle comfortable. It's the first time we meet with her and we felt comfortable with her. Adelle will be wearing an eye patch from now on to help with the double vision. Dr Lamb (our local GP) also encouraged the paracetamol at regular intervals for the  headaches instead of giving her when she have the headaches. as of the dizziness there's not much we can do as this is due to the building of pressure in the brain and both ben and i do not want to go down the steroid path. as we were talking to Judy she complained of another headache and i gave her some paracetamol and she then fell asleep.


When she woke up three hours later and told she's still seeing double, obviously the double vision was irritating her. So Ben and I introduce the eye patch in a fun manner and that when we buy the eye patch she can decorate it. She was not keen about looking like a pirate but was happy to decorate it herself. So i took off to the pharmacy. Unfortunately they had only black ones and not pink or white. i wasn't sure how she was going to react but she was happy with wearing it when i got home. She was in the middle of watching her movie and i think was relieved to be seeing one screen again. Louise her teacher will also be introducing the eye patch to the class so that Adelle do not feel overwhelmed with her classmate wondering why she's got it. She had already prepared the kids yesterday about Adelle not seeing well with one eye and being kids they tried to see how things looks like with one eye. so cute. Adelle is very lucky to have such wonderful and creative teachers.

23 September 2013

Lots of ups and downs this week. Lets start with the downs.

During the past few days Adelle has continued to show some symptoms of deterioration but she remains this cheerful, bubbly and sometimes cheeky little girl. She is sometimes unstable on her feet and dragging the right leg a bit more now.The headaches are more often now and we are alternating between paracetamol and nurofen. Sometimes she will complain of a headache after 30 minutes of a pain killer especially if she's been running around and i can't give her another dose until the next due time, so i would encourage her to lie down for a while which helps.

On Friday she told me that she is seeing four, another two eyes on her forehead. Now she refuses to tell me if she is seeing double, but you can see that she would close one eye when she's looking at something. She is not too kin with wearing the eye patches anymore.  The drooling started recently and she has been complaining of belly ache but would not go for a poo. I phoned PMH yesterday and they advised me to give her Lactulose which helped but her belly still feels hard, hopefully she'll poo some more today.   Her apettite is very good and enjoys her mckers and ice cream like usual.

Now the ups....

Ben and I are alternating half days at work now and that seems to be working. The school has been very supportive in the regard. On thursday afternoon Ben fulfilled her desire of going swimming at the local leisure centre and she had a wonderful time. We were are very fortunate to have very good friends here, Kate brought Anahera over this afternoon for a quick hello and brought some puppet making art kit and diary design kit to keep her busy. She started the puppet as soon as they left. She made mummy, daddy, Adelle and Hannah puppets.

 On Friday she had a surprise play date with Mikala S, she was very happy to have a friend at her house and was running around the house while Ben and I spoke to the silverchain lady, Judy who came over for medication advice. PMH has been very quick with sending the medications that we may need in case of an emergency. In this regard i now have some peace of mind. later on she had a visit from Louise her teacher. Mikala had brought over two patches and stickers to decorate but they got busy with puting up a puppet show instead and they were hilarious. She had a teddy dressup, cuddles and story time with Louise. Later the kids enjoyed some fish and chips for dinner before Mikala S mum came over to pick her up.


On saturday she had another play date at Mckers with Anahera and Annie-Sue. They had a wonderful play but Adelle got tired pretty quickly but not tired enough to go dress shopping. I had brought her

wheelchair with her and she was able to chose her dresses and shoes while i push her around best and less. we had a great mum and daughter shopping time, especially when she chooses clothes for me. By the time we got home she was quite tired so we both went for a nap. Nowadays she would sleep nowhere else but on top of my tummy for a nap or before bed time. Later Jacqueline and Louis, our Seychellois friends from Bunbury drove to our house and brought dinner. They had made octopus curry, salted fish salad and carrot and chilli salad. We had a good evening chatting and not to forget the wine. lol.

On sunday we went church like usual and Adelle pulled Ben to the morning tea that was prepared by the parishioners after mass. She had quite an number of sausage and we had a chat with Judy and other friends from church. As we driving off in the car Adelle told us that she wanted to jump in a puddle and at the same time she was putting on her rain boots that she kept in the car. We drove around looking for a puddle that looked clean enough. She and Ben had a couple of jumps in the water. The weather was looking sort of good to be out of the house so we decided to later go play 10 pin bowling and watch a movie.

Back home she complained of another headache and i gave her some panadol and she took a nap before we headed for the movie. she ended up taking quite a long nap. we managed to make it just in time for the start of the movie Turbo in bunbury. She loved every minute of it and was cheering turbo snail on. After the movie we went to play 10 pin bowling. the three of us had a great time. Ben won the game but Adelle was not happy finishing last, so the racing car game made up for her loss.  On the way back home we dropped by Jacqueline's house and she had prepared lovely creole curry and roast. We had another good chat before heading home.

THE TIMELINE: Adelle' s trip to France with Dad

I had arrived in Seychelles before Adelle and Helen since they had spent three days in Mauritius . On the third of July I went to meet them at the Seychelles International Airport . Adelle was delighted to see me again and she flew straight into my arms. I had missed her a lot since leaving Perth .
           
The next day on the fourth, very early in the morning, it was off to the airport again. This time we were taking the plane to France . Adelle as usual was quite excited and eager to get going. She has become quite the jetsetter and she loves traveling.

After taking off, she turned on her Ipad and kept herself occupied with her favorite movies and games. She wanted me to watch Tom and Jerry with her. After an uneventful and rather short journey, we landed in Dubai . We had two and a half hours to kill before taking the next flight so we had fun browsing the duty free for a while then we made our way to terminal C.

 It was quite a long walk but Adelle as usual turned it into a game. She enjoyed walking on the automatic ramps. We finally found out that we had to take a lift down to another level and from there we had to take a train shuttle to our terminal. By the time we got there, we had a short time to relax before boarding the plane bound for France . The new A 380 was comfortable and spacious and the touch screen television provided a wide selection of movies and games. Adelle poured through the movies and finally decided to watch "Tangled" the animated Cinderella story. At the end, she wanted to watch it a second time and she kept giggling and laughing at the funny scenes.

We landed at Charles De Gaule airport in the evening at around ten o'clock. We spent the night at a hotel close to the airport. Adelle wanted pizza for dinner so we  went down to a pizza restaurant.

It was quite late by the time we got into bed and after a few hours sleep, I woke her up at four thirty in the morning to get ready for the next part of our journey. We were going to take an early domestic flight to Toulouse to meet my sister's family.

After flying for one and a half hours, we landed at Toulouse airport and we met Philippe, my sister's partner. We drove to the flat where they were staying. Natalie who is one of their close friend had very kindly offered to let us use her flat for a week.

It was lovely to see my sister Gemma, Philippe and their  two boys again after a very long time. I remember the kids when they were mere babies when they visited Seychelles . We saw them again about two years ago back in Seychelles . That was the first time Adelle got to meet her cousins and relatives because she was only eight months old when we came to Australia .

She was very proud of her cousins and often referred to them. The weather in Toulouse was pleasant. It was quite warm and everywhere was nice and green. Adelle had a lot of
fun with the two boys watching cartoons on the computer and playing Wii games. They even got hold of a blonde wig and they had a lot of fun wearing it.

Gemma knew that Adelle wanted to experience snow and she, Philippe and Natalie went to great lengths to organise that for her and for that we are really grateful.

 

Adelle got on very well with Natalie. On Sunday, we took the underground train to go and do some sightseeing in town.

On Monday, we left for the Pyrenees mountain range. It was a good three hours driving just to get there and we came across the "Tour De France" which was being set up for the competition.

After a little picnic lunch we finally got up into the mountains and it was great. we stopped to see some wild Llamas. As it was summer, most of the snow had melted, however there was enough for the kids to walk in and play with. Philippe, Adelle and the two boys tried to climb the steep sides and they kept slipping and falling. I was wearing biker boots with a good grip so I was able to climb more easily and I just kept laughing at them. We had a great time and all too soon we had to head back down.

Gemma and I stayed back because I wanted to take Adelle to Lourdes which was at the base of the mountains. The others headed back to Toulouse .

Lourdes was a more solemn experience because we were there for the religious and spiritual involvement.

Having been to Lourdes before, Gemma was very efficient and helpful. She organised meetings for us with priests and suggested a timetable for all the events that we should experience during our short two and a half days at this most holy place.

Adelle rode around in a wheelchair since there was a lot of walking to do. I took her to the grotto where the Virgin Mary appeared to Bernadette. Visited a priest who blessed her and gave her the anointment of the sick. He was surprised when Adelle suddenly asked to write her prayers on some paper. He insisted that we take her prayers to the grotto and put it in the supplication box because it came from her with no pressure from me.

So when we left, we did just that. We were also lucky to be able to have a dip in the bath of the sanctuary because there is usually a long line of sick people waiting. Sometimes you can wait all day without getting to it.

Later on we got a huge candle and we both wrote our prayer intentions on it before taking it to the "brulieres" to be lighted.

On our last day, we met with Etienne, a volunteer who usually helps people to attend various events. We took Adelle to the Stations Of the Cross so that she would express what she understood by each station.

After buying some souvenirs for friends and relatives, it was time leaves this amazing place. We took the train back to Toulouse and Adelle kept up a chatter all the way. I would have thought that she would have been really tired.  Natalie and Adelle had fun making things out of play dough and afterwards played with her cousins.

The next morning at around nine o'clock, we went to the airport where we said our goodbyes. I am really grateful to my sister Gemma, Philippe and Natalie for everything that they had done to make us feel welcome. I left Toulouse with a lot of hope and very good memories. We traveled back to Charles De Gaule airport in Paris and flew to Seychelles to meet the rest of our family and relatives.

Benjamin

THE TIMELINE

28th July 2013- We're back!

On Friday 19th Adelle and I flew to Perth via Mauritius. We stayed for one night and day at the Blue Lagoon hotel. I decided on completing our holiday with pempering ourselves at the beutiful resort. we arrived at the hotel at about 6pm. the staff were very welcoming and the dinner buffet was just devine. Before dinner, she enjoyed sitting at the bar (as she thought she was a big girl, lol) to have a drink. after dinner there was karaoke and live music and she was the first one on the dance floor.

Saturday morning we went for a walk on the beach and then enjoyed a swim in the pool. She made friends with a  little boy of about her age  and played soccer. In the arvo we were off to treating ourselves with a massage, manicure and facial. She was not keen to do any of them but was very happy to help the beautician and chose a nail polish for me. we had a fantastic day.  On the way back to the room we stopped at the bar for some hot chocolate and coffee. I think she had the hots for the bar man lol because she asked him to make a rose made out of napkin for her twice now and she asked again later before dinner.

That night we flew home WA. She fell asleep before the plane took off and i woke her up when we landed, six hours later, however i did not get much sleep on the plane. Luckily we had three sits just for the two of us, so she was able to stretch out on two sits. Georgette and Jimmy picked us up from the airport and it was very nice of them to take care of our car while away. the drive home was mostly based on drinking Mothers to stay alert.

It felt good to be back home and Adelle not being tired went straight in her play room and started telling the teddies her adventures while i still had to fight sleep and cook dinner before we both fell asleep by 6.30pm i think. (Ben had not arrived then as he went through Dubai in case you wondering)

Monday the next day she had a play date and Mikala's house while i went back to work. she had a wonderful day, she made some creative handprints and footprints art, went to brush the horses. Thanks Jasmine for having her for the day and giving her a fantastic time.

Unfortunately that night we had to drive to Perth airport again to get daddy. she slept all through the drive. we arrived home at about 2-3am. Despite that she was in great spirit to go to school that morning. As soon as we got to the office, we saw Anahera running across the field to meet her. it was so good to see the too of them hug. obviously they missed each other. Immediately Adelle started her stories of her holiday.

This afternoon to my surprise i got the family photos all framed (that we took before going on holiday), on CD and in album by Debbie, Darran and Charlee Kirkham family. Thank you so much for thinking up the idea and finding the time to take our pictures, the photos are amazing and we absolutely love them.

Yesterday, saturday she came with me coaching netball and she had some fun playing with the other kids at the courts. then we collected Anahera for a sleepover. On the way home we got some Mc Donalds and she wanted the usual, ice cream with nuggets happy meal. i think the staff in the driveway are use to our family by now because this week we have gone through just about everyday after school. Lets just she Adelle is always hungry for Mckers. lol.

Healthwise Adelle is getting weary and tired on some afternoons and this Friday she complained things being too loud in class and covered her ear. I remember this happening last year before she was diagnosed with DIPG. otherwise she's a sweet, happy sometimes cheeky little girl.

THE TIMELINE

13th July 2013

Adelle arrived in the Seychelles on Thursday morning and as soon as she got at my mum's house, I gave a her a shower and she had a long five hour nap. I had organised for us to go to the beach in the afternoon when she wakes up but in the end it was too late so we had lots of cuddles for the rest of the day instead. During one of our mummy daughter conversation i remember i asking her what makes her happy, "excited to see mummy", what makes you sad "when mummy shouts" lol.

On Friday we went shopping for some beach stuff. Her nana (my mum) spoiled her with buckets and spade, water guns while she got a floater wheel with her pocket money. She was so happy to be handling her own money that she wanted to buy anything, in the end she got a ball, new pair of dora and boots slippers. in the afternoon although we planned to go to the beach again, the weather was not on our side, as in the July months is the "winter" months in seychelles, i.e cooler which i love compared to December which you feel hot and sticky, there is a lot of winds and rains.

In the evening we were invited to dinner by the Choppy family, who is a mixture of cousins and godmothers...... my mum is Penda's (lady in orange/pink shirt) godmother...Penda is my sister's, Annabelle, godmother, and i am Monik (Penda's daughter), (the beautiful teenager in pink) godmother. we had a beautiful  meal at the Eden Island hotel and restaurant. Adelle started off the dinner being slightly tired but half way through she was re-energised and was playing with Zak, Penda and Yves son. later we went for sightseeing at the new mall and had some yummy locally made icecream. Adelle loved every minute and was running around the mall with Zak.


This morning the weather was just beautiful and off to the beach at Beau Vallon we went. Adelle and I enjoyed the water which was just perfect, the sand under you feet was so soft and felt like walking on sponge with absolutely no rocks. it was just a great swim. then she built send castles with her dad before we enjoyed a last swim before heading back to her grandmas (Ben's mum) where the family is gathering to spend time with her.

Healthwise apart from a slight cough every now and then she's doing fantastic.


Hello all

Below is Adelle's update from her Aunty Gemma in France.



Helen,

I hope you are well.
I write to give you a few news on our side.  Since the 7th we left Toulouse for the Pyrenees, and ADELE SAW SNOW.  We have lovely pictures to show you.  She was so happy to be able to touch snow, slide on it and make snow balls. Ben and Adele were so Lucky to see snow at this time of the year and had fun. They played and fell down on snow.  It was really funny seeing them falling down as snow is slipery(as says Adele). The weather in the mountain was super, not cold and we all enjoyed a warm chocolate before driving down to the plains where we had to wait a while for the tour de France to go through, for the road was blocked fro the event.  And Yes, we saw the stations for the recent tour de France but did not stop to Watch them as our objective was reaching the areas where there's snow. Nathalie our host, and Philippe drove us all.  The trip took two hours or so to reach the pyrenees.  We had prepared a picnic and stopped near a small river on our way to the mountains. Ben, Adele and myself stopped in LOURDES on our way back and we checked in the apartment hotel booked some time back.  The rest of the family drove back to Toulouse.

The past two days we were in LOURDES.  We have just arrived Toulouse on train from Lourdes, with a lesser weight psycologically, tired but happy that we did a pilgrimage for Adele. The sanctuary is as usual full of people coming from all over the world. Ben and Adele did their pilgrimage, with prayers and they went to the sacred places. The must was the bath that they did on the 8th morning.  We started our day early at 0830hrs  to be able to do the maximum as we had only a day and a half to really complete the program we had organised.

The first thing they did was to go to the sacred bath.  I was immersed with emotion for it is a special place, and how to relate what you feel once inside is difficult to explain.  The silence, the prayers and holy songs reminds you that you enter a sacred area.  The sancturay is professionally organised, with bénévoles at different junctures, to help the sick and invalides go through easily and Ben and Adele did not have to queue up and they were helped and guided through. We had a Wheel chair for Adele so that she doesn't get tired easily adn that she manages to see and attend some cérémonies.  She was forever great and cheerful.  We also got some assistance from the OCH, who takes care of Young people.  Therefore they benefited with the assistance of Etienne, a Young benevolat who accompanied them through the 'chemin de croix',  a mass in English, the grotto, and the crypte to-day. Etienne used the language of a child so that Adele does the chemin de croix with her daddy.  She was engrossed with the stories of each station.  Ben assisted as well.

Adele is so nice that people like her. For example, whilst shopping, a lady stopped to give her a gift.

Our stay in Lourdes was spent at the sanctury mostly and we tried to do as much as possible. We also collected blessed lourdes water, put a candle at the 'bruloirs', and attended the 'eucharistique procession'. Ben will give you more détails of the visit. I stayed with Adele when needed. Lourdes is a nice place, but we had to leave to-day for they are flying back to Seychelles tomorrow morning.  Ben will send you the détails of arrival today.

Adele has been playing with his cousins at the WII, and right now I think she is helping Nathalie in the Kithchen.  She is well, so you do not have to worry.

We were really happy to have Ben and Adele with us these last few days.

We think of you and pray that Adele gets well and that God gives you strength and hope that Adele gets well.

Regards

From all of us

Gemma and all at home

19th July 2013

This is the last update in the seychelles. It's amazing how time flies

Adelle is doing fantastic, cheerful with a cheeky sense of humor at times and has been having a wonderful time over the past few days. she occasionally get tired but otherwise she's very lively and surprising me with vocabularies i did not she knew.....cheeky little monkey. lol.

Sunday was a very windy day but that did not stop us from enjoying a fantastic lunch I organised with close friends and relatives at my auntie Asia house. As her property is right on the beach, Adelle enjoyed every minute in the sand and water with her 2nd cousins. Although communicating with her little cousins where tricky the manage to have a blast and the next day she asked to teach her creole. lol, so nana and i gave her a crash course. Now she knows about five sentences.  i suppose its only now that she realised that the creole Ben and myself have been tryin to teach her back in aussie was necessary. She now has a normal 6 year old appetite i.e sweets and ice cream which is just fantastic to see.

Adelle and her Great Aunts

Monday we went for a ride in the south of the island with Nana. we had lunch at creole restaurant where i had a delicious octopus curry and she enjoyed pasta like usual. Some things never change. lol. then we were off to the beach (see pics with big rocks). It was just a fantastic location, except the next day she was counting sunflies bites. I

Adelle with her cousins

In the evening we went to visit her great grandma, great grandpa, aunts and cousins on my dad's side of the family. They had also prepared a prayer session and Adelle recieved sacrament for the ill by the local priest at the church. I must at this point mention that everybody we know in the Seychelles has been praying intensively and making special masses for Adelle.

Adelle and her Grandpa

Tuesday......shopping spree. My little sweet sweet can shop alright. she made sure that she got what she wanted from all the pocket money she had been getting. then she helped me chose some flowers for me to bring at the graveyard the next day. In the afternoon we were planned to see an aunt but she was too tired so she had a rest and watched her new bday present from uncle Frank from the UK, barbie and the three musketeers instead.


On wednesday morning I dropped Adelle at her grandmas house while I went to visit the gravestone of my Grandma, who i've been dreaming of, of late and my aunt, grandpa as well as my baby sister who passed away at birth. Later she had a play date with Zak and Monik while i caught up with gossips with their mum. lol. Then off to the beach with my all time good friend since we were in kindy, Laura and her son Ryan. Adelle was very impressed when i told her how Laura and I kept being friends for all these years. then we were join by another of school friend Veronique and her two daughters. She enjoyed playing and sharing her toys with the kids. that afternoon on the beach there was "Bazaar Labrin". so i made sure i enjoyed the black pudding while Adelle enjoyed the mangoes. later we went for dinner at one of nana's friends. Adelle enjoyed the food but she was yawning and falling asleep while eating. lol. she looked like one of those clips on Australia's funniest home video.

Thursday was saying goodbye day. Grandma, Grandpa and aunty Giselle and cousin Samantha prepared a delicious creole lunch for us. After enjoying her food and desert she fell asleep on Ben's lap. when she woke up she got some travelling presents and beautiful sundress which she wanted to try straight away. then we were off to the beach with daddy Ben. we had a wonderful time and enjoyed the fine sands for one last time.