Sunday, 22 September 2013

THE TIMELINE

26th April 2013

As we say 13 is not a lucky number, I get in this email is true. Adelle's MRI results were devastating and i was not expecting regrowth so soon, she was doing so well. Anyway now it is a matter of enjoying the time we have. She's now off the clinical trial and her appetite is amazingly back very quickly. i guess she's rediscovered the art of eating again, lol.

Now an update of the last few weeks:

1. Mothers day, I was spoiled rotten. It all started with a pampering morning in her class where she gave me a hand wash massage, followed by moisturiser, cakes and juice. i should be having these treats everyday...lol. Sunday i woke up to a beautiful bunch of roses and perfumes, then a beautiful lunch which she helped daddy prepared. That Arvo (afternoon) we went to the movies and watched "Escaped from planet earth". She was so excited.

2. In the school holidays we spent a night in the Wyndham hotel in Perth, just the two of us. There was a massive Jaccuzi, in the room and I think we spent over an hour in there watching Tom and Jerry. Then it was dinner at Nando's and she loved the BBQ chicken. She had a few play dates, sleepovers with Anahera and sometimes Anahera's little sister over. they normally have a blast and goes through the playroom like a tornado, they would perform shows exactly like in the schools assembly and bake cupcakes. what fun...

Can you find Adelle? 5th from the right.
3. At school she's enjoying every minutes of it. Last week it was her class's turn to present at assembly. "life of the Caterpillar" was the story. We spent time on Sunday making a salami out of cardboard box. in the end mummy did most of the colouring in.  She had her line to say "one slice of salami" and did very well saying it. My camera did not do a very good job unfortunately. The school recently got two calves which she enjoyed feeding them after school on one occasion. Thanks Deb for taking her there. Last Friday she had cross country and she was able to run the whole course, i missed the run by 10 minutes unfortunately. oh well.... However the previous day (Thursday) she requested that i be a parent helper in her class. As i had a DOTT and have completed all my prep, I went to listen to her classmates read. Wow these little six-year- olds reads very well. Then we had a science lesson, mums favourite subject, and we had a look at earthworm using magnifying glass. The discovery was just great. They got to draw what they think earthworm looks like and then had a closer look. It was a fantastic morning and I hope to do it again next week.

4. On Friday she was given a school's netball dress for netball on Saturdays (yesterday) from Mrs Peters and Mrs Green, her educational assistants. Thank you girls, you're awesome. she's been training the girls with me during the week and attend the games on Saturday and now she looks just like on of the girls. she was very proud to wear her dress and as soon as we hit the court she wanted to shoot two goals. And she did it of course, obviously she's sporty just like her mum "used" to be. Hahaha.

Her birthday is coming soon 12th June, and we are planning a kids party at the Country life farm in Doungsborough, on Sunday 9th from 11am to 2pm. if you got this email, you are invited of course, just RSVP. She wants a costume party (thank goodness she did not request any themes).


My Goal from now is to have fun, fun, and more fun with my little one. It's my priority to make all her desires come true. For now they are

1. visit relatives (already booked flights)
2. Visit her three nieces and only uncle in the UK which she's never met personally ( this is going to be tricky)
3. Visit Ryan and Anne-lor (her best friends from the "Rodrigues")(booked)
4. Go fishing ( i need to organise this one, I've no idea how to fish, I'll be glad to have some help here)
5. Touch snow and make angel wings. (tricky but doable)

If you have anymore fun to do ideas, please let me know.

Today after church we picked up Anahera and after lunch, we'll be going to have some fun at the escape park. We'll all be jumping on the big trampoline.

To my Seychelles friends in Australia, if there is any "Bal" you know going on over the long weekend, can you let me know. Cheers.


31st April 2013


This week has been a mixed feeling week. After last week I've been basically working on automatic mode. Adelle has had an awesome week at school. Today she read a prayer in chapel. To cut a long story short she made me miss it. Maybe she did not want me to be there, but her teacher said she did great.

Yesterday I went to her class again as parent helper and enjoyed reading "The Tree" with her and her classmates. Then Louise, her teacher had a fantastic idea, a painting made by her and myself. So we enjoyed painting  a day at the park with Hannah the teddy. Speaking of teddy, this weekend we have a special guess sleeping over at our house, Eddy the teddy who is the year 1G teddy.
This weekend is Adelle's turn to take him home. The first when we got home she introduced Eddy to Hannah and then showed him around the house. Eddy will be having great fun.

Yesterday was also the school's book fair. she got me to buy five books and had me reading all of them to her last night. I think my jaw had a good exercise after all that reading.


Healthwise she's doing fine. Except for short tempered when tired recently, there has not been any significant changes in any way this week. she's running about and just enjoying being a kid. Now we have a big bday party to take care of. any ideas of any snacks kids love, let me know..


3rd June 2013

Adelle's update 15th

This weekend was quite exciting. Saturday after tidying up the house we drove to Mandurah to Georgette's house. we went to Kmart and she chose a pink pair of boots which now she goes everywhere in. Eddy and Hannah the teddies got to help with selecting the shoes.

That night we went to a Mauritian/seychellois traditional dance night. As soon as the concert started, Adelle wanted to go close to the stage to have a better view at the girls dancing. Soon after she was among the first on the dance floor. She had the stamina to dance a number of songs before falling fast asleep on Ben's Lap.

Sunday we went shopping for the birthday party. She was so exciting choosing her stuff and putting it in the baskets. then we went to visit another Seychellois friend whom we haven't seen in over a year. She got to see Prea once again and they got to play together for  a while. Prea was a frequent visitor when we used to live in Mandurah two years ago now. It felt really nice seeing them playing together and us adult having a catch up on gossip and laughing out hard. With Lewis around its kinda hard not to.

later we went fishing. this was our first fishing trip and she enjoyed helping Ben tossing the line while Georgette and I sat on a rock and gossip. It was not long before she realised that some gentlemen close to us were catching fish and she wasn't, so started to get bored.

This afternoon she enjoyed part of the afternoon playing at Anaheras house. Kate (Anahera's mum) got her a nail polish kit and activity from her Canberra trip and they got busy painting. I'm hoping of getting a manicure from her sometime this week. lol.....


In regards to her health, she's doing fine. only thing I've noticed is that she's having trouble buckling herself up in the car since Friday night. Ben and i have been doing that for her since.
otherwise she's this lively, loud sweet little "pussy cat" i call her, with weird knock knock jokes. lol....

20th June 2013

Birthday!



After a long week of reporting and being mum I finally get a chance to send a well awaited update I’m sure

The past week has been fantastic for Adelle. Where to start…..


After the memorable, fun-filled birthday party we gave her a day off on Monday as she was looking tired.  By Tuesday she was fully recharged. Dad stayed home with her and she finished opening her other two bags of presents. When I got home that night she had lots of nice presents to show me. Even Hannah had a present, a beautiful hand made “tutu” made by Adelle’s teacher Ms Leyden.



I would call myself very fortunate to have very caring and lovely friends-colleagues who came to help out at the party. Denise, Adelle teacher took beautiful pictures, (attached) too much to upload all, haha, Kerri made delicious sausage sizzle, and my netball girls took more pictures and kept  an eye on the kids. It was a day to remember.




Tuesday, year 1G had another special day. It was midyear class costume party. They truly deserve it.  It’s amazing how much work year 1 kids get through nowadays compared to when I was in year 1. Seems like a century ago now. Adelle dressed up as a ballerina fairy princess. Absolutely gorgeous.


Wednesday was her actual birthday. She woke up to more presents. Even I had a present, cooked pasta ready to be frozen from Jocelyn, Adelle’s teacher from pre-primary last year. It was a blessing as cooking is not on my list of priority at the moment. That night we went out to dinner and we surprised her with a cake at the restaurant. The team Princess Margaret Hospital sent her a present on that day (good timing) and they were gorgeous bday candles that we put on her cake.  Back at home was another long awaited present…a scooter. All in all she had a great day.



Last weekend was another fun-filled and exciting one. This time it was Anahera’s birthday party. We had a sleep over at their house, so I could help out early in the morning. Adelle enjoyed the pony rides and the lovely Barbie cake, while I enjoyed trying on costume hats and have relaxing chat with other parents.  She got to practice using her scooter around the park which she must have done 10 laps or more cause by the time we got home she was knackered.



Health-wise she’s doing great. No obvious symptoms visible except for slurring speech when tired.  Other wise she’s all energy and excited to go to school and have fun. She even send Hannah to day care each day (teddy nook) in the mornings before leaving the house.. how cute lol.

29th June 2013

This is weeks worth of update thus quite a read


What a week for both Adelle and myself. On my side I’m just grateful all reports are completed and all lessons prepared and finalised before we start our tropical islands holiday. Woooohooooo!

Adelle had a wonderful week. Last Friday she had a sleep over with Mikala S and they played wonderfully. They both loved “gangam style” and was dancing away. In the car Adelle favourite songs are Crazy (one direction), try (pink), single ladies (beyonce) which she gets us to move between track over and over everytime she’s in the car. So this night she was showing off to Mikala that she could sing these song. We had a pizza night and the girls had a feast.


The following morning I had to cancel netball coaching and something else I was meant to do, can’t remember now as I realized that the Satudrday was my only day of doing some shopping before we leave on holiday. So Adelle and I went off to Bunbury shopping centre . It was fun time shopping with her as she got to tell me which dress she likes on me and which one to put away.



Sunday we were meant to have a family  photo shoot by Debbie, Charlee’s Mum from Adelle’s class as well as later go fishing in a boat but the weather was not our side. In regards to the latter, Kate’s husband Louis organized a fishing trip with one of his mates. I’m not sure who was more excited between Adelle and I but the weather blahhhh. We’ll try making it when we come back.


After shopping I picked Anahera up for a sleep over. The girls got down to their usual “girl thing” i.e put up a concert, “making”, and  dancing and the list goes on, it was wonderful just listening to them. on sunday I did Anahera's hair. She looks absolutely beautiful. I can open my own hairdresser I think.



Monday was a painful day for both Ben and I. Princess Margaret hospital organized a fruitful meeting with all the parties concern in caring and involved in Adelle’s health at our house. We had out school’s principle and deputy, Louise her teacher, Dr lamb our local doctor and palliative care doctor, and silverchain nurse, Liz, who will be taking care of us when/if required. Suzanne and Ranita from PMH explained the situation and what to expect and any risk management if anything where to happen at school.  Suzanne explained the situation in simple words “rather than medical” that everybody understood. Ranita gave very good ideas on communication within the community and provided a list of books that could be used.  Dr Lamb took down the list of medicine that we will travelling with and wrote a letter in case we encountered problems at the airport. All in all we will be in contact with the hospital here if anything were to happen while we’re away. But I’m optimistic nothing due the illness will happen. “mum knows these things”

On Tuesday I kept her home because she coughed all night and barely slept. That day home worked miracles as the following night not even a cough was heard and we all had a good night.

On Wednesday she went back to school. A magician paid the junior school a visit. I thought I could attend but I had a class at the time. I got a cheeky telling off from her for that. But she absolutely enjoyed the show by the amount of info I had to listen to when I collected her afterschool. I had to keep pace with the amount of tricks the funny magician did. By the sound of it, she had a wonderful time.

Thursday I was the one acting like a baby. I went for a flue shot that our school is funding for the staff. It HURTTTTT. To make matters worse I had a volleyball game that night. In the morning my arm was really sore and to top it off a colleague gave me a pat on it unaware of course. It still SORE.  However my pain was soothed with a beautiful book made by Adelle’s class for her. It’s called Adelle’s funny face friend. They all had a funny face on each page with a little letter of I like Adelle because…….  I was "aweing" at each page of how cute and kind their letters were. She asked me whether she can take in holiday to show her cousins…OFCOURSE.

Friday was a blessing for all of us. Last day of school and work, now off to packing. Yipeee. Afterschool we went to for a family photo shoot in a beautiful park that we missed the sunday. we just manage to get pics before the rain came. it was great timing. thank you so much Debbie for the great idea for our family and i look forward to look at the pics. then Ben dropped us off at Anahera's house where she gave Adelle a flight present in a folder with their pictures on it.  Later we went to Mcdonalds for dinner and Adelle told Anahera that she's going to miss her. How cute. They had a play on the playground before Kate drove us home. Thank you so much Kate for being a wonderful friend and taking care of our house while away.


I’ll keep you posted of our trip

04th July 2013

We arrived in mauritius with no problem. We had 8 hours of flight and Adelle slept most of the way, including myself. So we were both very energised by the time we landed into Mauritius. We had to stay one night in Mauritius before flying to the beautiful Rodrigues island the following morning.

It was great to see Marie, Tico, Anne- lor, Ryan and new baby Zion. These were very good friends in Australia a few months after we arrived in Australia.And i consider Marie my big sister. I am glad I made the decision of going over there. Adelle got to see Ryan who she practically grew up with and were very close.  when they got home from school i got so many cuddles, obviously he missed me and I him too. It was great to hear them playing and running about like it use to be.



We got to enjoy the beautiful beaches, fresh grilled fish (adelle helped put up the fire), biryani (my favourite) which Adelle ate all and other yummy local food. We met her relatives and had a fantastic time. the only downside was getting use with the time difference but we're good now. Tico, Marie husband spoiled us with not only fantastic dishes, but with local gifts and presents. thank you guys so much for giving us a good and relaxing time. it was a very short visit, but i enjoyed every minute.
Adelle putting up the fire 



adelle is doing great except for getting tired and having a lie down sometimes in the afternoon.



Yesterday we flew to the Seychelles and this morning she flew to France with her dad only. There she will go the holy water in Lourdes, then the snow mountain (her wish).



She's in great spirit and I'll keep you updated with her time in France as soon as I receive them.

THE TIMELINE

27th April 2013

Its two weeks since we left the gold coast. Wow, how time flies. Adelle is still talking about it.

She was very happy to go back to school and tell all her friends about her adventures. Anahera, her best friend was so happy to see her and what a hug i also got from her as well.

They look so cute together. In fact last weekend Ben and I agreed to let her go on her very first sleepover at Anaheras. It was hard on both of us to let her go (being overly protective) but we've built very good friendship with her mum and dad that we felt it would be just fine. Which it was. When I told her about it, she started packing her "not necessarily required' things and Hannah teddy "bed". it was so cute watching her. At Anaheras she had a blast, went to the park and fed the ducks, then Mcdonalds where surprisingly she ate half a double cheese burger.





I got sidetracked there, back to week at school. That Wednesday it was Nana's birthday. I gave her a surprised sorta birthday cake at her favourite chinese restaurant.  Adelle was as excited to blow the candles.
  

The Friday was a big eventful day followed by a fluro disco after school. Her class had dress up day; pirate or mermaid. i had/wanted to be creative there but i ended up renting a pirate costume, lol.  That arvo we were all too tired to make it to the disco.

Last week of school which was last week was even more fun and eventful; Camp week!!! Monday I sent her to her class from morning to noon. since she arrived at school she was spreading the news that she was going camping with mum. At about noon I collected her and off in Mrs Vogels car to the train station. The students were very excited to have her on camp. As we were doing the amazing race around Perth, I was supervising a different group each day and the kids were just wonderful with her. They would take turns in pushing her pram, carrying the pram on the train during peak hours, holding her hands, spoiling her, helping her with her dinner. She mostly enjoyed the zoo, IKEA (she thought we were there for shopping, lol), she to get "lewey the panda" from Mrs Vogel as her mascot as all the other groups had a mascot, then she went to the  police academy where she got to wear a helmet, fell asleep at an ECU presentation, lol, went to the cinema and watched "the croods", which is just a fantastic movie, she was so engaged in it, screaming run, run, run.... (if you've watched it you'll know what i mean), at kings park she enjoyed the little pond in the RIO Tinto Nature Reserve. she joined some other kids throwing pebbles, what fun but cooold , then it was the great escape water park at hillaries; though the slides where too intense for her, she enjoyed making sand castle and running about in the water and lastly she enjoyed the fremantle prison where she got to help carrying around a big set of keys for the tour guide.


let's think...

In the mornings she would be out of our cabin wanting to see what she referred to "The big girls". Her appetite seemed to have picked up during camp week and as I was spending more time with her I noticed that she would ask for food every two hour or so and she's developed a taste for just plain bread. On Friday she ate a slice of lasagne all by herself. however with all the running around, (being pushed around in a pram, lol) her weight has not picked up much.

The night back from camp was filled with stories both from Adelle and I as well as daddy as he was on another camp as well.


The downside of the past two weeks was that the grandmas flew back home to the Seychelles. They've been here for three months already, how time flies and i don't know how we would have managed without them. they were very supportive, made delicious meals and kept the house in order. We will surely miss them. As their flight was scheduled while we were on camp, "Where is Grandma and Nana?" asked Adelle as she walked through the door. I had to remind her that they'd gone back home. Apart from their luggage being overweight, they made it back safely.

Her last MRI showed the tumor is stable.  She's having another one in two weeks time and this week is  her monthly review and speech therapist appointment. Apart from her weight loss, due to the trial chemo, she is otherwise fine. She's getting tired with the "monkey milk" and i think we will have to look for an alternative nutritious fluid.

We are now on school vacation and she'll be enjoying some quiet time with mum and dad.


At the prison

At the pond
          


THE TIMELINE

04th April 2013

Hello all,

As most would be aware, Adelle was granted a wish from “make a wish Australia” to go to Australia Zoo, then Sea world and Dream world. This will help her with her healing process and we have seen noticeable change since then……….she is asking for food, yippee. I would like to thank Kevin and Rachel Peachey, who's daughter was diagnosed with same tumour as Adelle's for recommending make-a-wish Australia. And our school's (GMAS) support for allowing us to spend this time with our daughter we are very most grateful. Another huge thank you for make-a-wish for organizing and making her wishes come true and still more to come tomorrow, you are an amazing team and special thanks to Dee for being so understanding and patient with me. We do not know how to thank you enough.

Now for a quick summary of our adventures...

At the sunshine coast, on Saturday Adelle, (Hannah teddy),  Ben, Nana, Grandma and myself were welcome by  Sara, who’s a Make-a-wish volunteer, who presented us with a hamper.  Adelle enjoyed the teddy bear biscuits in it.  She was extremely helpful especially in locating a church for Easter Sunday for us. Then we enjoyed the magnificent beach, food and hotel by the beach.


On Monday we went to Australia zoo where she saw her favourite zoo animal, the giraffe. She had a great time watching one of Steve Irwin tribute show…the “wildlife warriors show”, where very brave man and woman did tricks with crocodiles. The best part was when a bird was able to pinpoint and stole a $5 note from an audience.

Wednesday we drove to surfers paradise in the gold coast. We  were welcomed by a lovely make-a –wish volunteer, Jill, at the Mantra on the circle hotel, who sat down and have a chat. She gave Adelle a Barbie colouring book which kept her busy while Ben and I enjoyed the breath taking view of the coast from the 44th level. The Hardrock Café also sponsored us a free dinner and wow, the food was just amazing. The walls of the café was covered with all those awesome rock artists and guitars, Ben (being a hardrock fan ofcourse) really enjoyed it.

Yesterday was Sea world time. The highlight of her day was the meet and greet with Dora the explorer, her idol, where she had a chat with the character and showing off that she can count in Spanish. Later she was singing and shouting along with other kids in the Dora show. It was just a fantastic day and the weather has been on our side since arriving. Hurrah.


Today is our day off and Adelle wants to go swimming in the hotel’s pool.  Tomorrow is dreamworld and we’ll keep you posted of our new adventures.

07th April 2013

We're home and in great spirit. so much has happened since last update and I'll try to summarize.....

Thursday was our day off, so Adelle and I had a good swim in the heated hotel pool while Ben explored the gold coast. Then we were off onto the Aquaduck, a truck that goes both onland and in water. We had a tour around the canal and Adelle got a chance to be the captain.



Friday we went to Dreamworld, and yes we were in a dream. she watched the wriggles show and did some meet and greet with the crew, then shreck and Fiona. she enjoyed some rides that we felt would not be too stressful for her, eventhough she was keen to try some rollercoasters.



As for Ben and I, one roller coaster ride was more than enough and till now I still feel light headed, lol.

Saturday was time to head home. After checking out we went to Whitewater world as to kill time before catching our flight home. Adelle enjoyed every minute

.


Sunday was a very special day. At 10 am we registered at the Pan Pacific Hotel where Adelle met her friend Charlotte Peachey who both recieved a Children of courage Awards 2013, sponsored by Lions Club of Busselton and PMH, for their bravery throughout their treatments. We were very emotional and proud parents.


Saturday, 21 September 2013

THE TIMELINE

27th January 2013

Good and optimistic news!!!


On Friday we received Adelle's MRI results and her tumor has shrunk by 84%. This is fantastic news and we are hoping and praying it continues to reduce. We've since been in good spirits and celebrating.

This weekend she had her very first sleep over and she was such a good host and had a great time. It was such a joy to hear loud laughs, singing and dancing. With her friend here she managed to eat more than she has eaten in the past weeks.

The weekend ended with a trip with the grandmas to the vineyards and looking at the kangaroos
                               







 10th February 2013

Hello

First week at school was welcomed by all of us. Adelle had a 10 day count down and was the first up on Monday morning. She's had an eventful and great first week. She was happy to see her friends and I have not had a reason to take her home due to tiredness. Of course she gets tired in the afternoon but like every other five year old will be after running and having fun. Her teacher says that she's a very attentive and good listener and manage to count and write to 100. If only she was attentive to me too, lol.



Her not so bright day was friday when she had her blood taken. Although her teacher did a great job putting her elma cream (numbing cream) on both arms, the nurse could not any veins so they had to use the veins around the knuckles, not fun, especially without the elma. For the first time, she had by all means her right to cry (usually she's brave). I was not happy about it either.

This week she has beach carnival on Friday and she's looking forward to it.

Healthwise she's doing great actively but still not eating as she should. She eats well with her friends at school, but not at home. Still, at least she's eating something.


 20th February 2013

The past two weeks have been busy. Adelle received a certificate for her efforts and interesting ideas at school. She is now in year 1 and think she is too big for mummy or daddy to bring her to her class in the morning. so we have to stand at our office and watch her walk across the play field. Oh yes, Ben and I work at the same school as Adelle's so this makes life much easier as all go in the same direction in the morning.

Last weekend she had another sleep over with her best friend Anahera. They had a blast. First we went to a free fun fair, where not only they had fun but the grandmas and myself got free hand massage, i learnt how to cast a fishing line.  then they spent the afternoon torpidoing the play room (if you know what i mean). they formed a band and adelle on guitar and Anahera on keyboard. We were hoping to go to the outdoor cinema in the eveing but ran out of time with  washing and combing the hair which was not fun anymore for either of them.





Healthwise, Adelle is still not eating and is now back to her normal weigth before she started the treament. however we are worried she will keep losing weight due to lack of appetite. She has gone to Perth with her dad this week (we take turns) for her monthly review so hopefully they will give her something nourishing.


The not too bright side is 1) Ben and I had to travel to Perth (5 hours in total) last week after work just to get her clinical trial medicine as we had run out. For some reason, we were short 6 days. It was not fun as we were both tired and although we took turn driving, it was not safe driving tired, even the "mothers" drink did not work. (high in caffeine to keep u awake). 2) The blood test on Fridays are getting a bit stressful for Adelle. Although she's brave, they had to withdraw twice with three time looking for a vein. Not fun for a five year old. Afterwards, she demanded her certificate of bravery LOL.


The grandmas are also doing well and we are so glad they are here as sometimes we give Adelle a day off school and there is someone at home to take care of her. Last Friday they accompanied Adelle to her beach carnival and then took her home. They have also made wonderful friends from church who takes them site seeing. They're off again this week. The "golden girls" are on the loose, hahaha.




THE TIMELINE

21st January 2013

Hello everyone

lots of news this week..................


Thursday, Adelle had her second MRI. She was able to lie still the whole time and was also brave taking the needle. On Friday, we were hoping to get the MRI results but were told they won't be ready until Monday and that it would be best to come on Friday for a weekly review. Therefore now we must wait until next Friday to see how effective the radiation has been.



Then it was off to shopping new dress and shoes as reward for keeping still. In the afternoon she had a Speech therapist appointment. The therapist found no concern in regards to her speech except for a few sounds like "th" which is common at this age and comes by age 6-7. She takes her time to pronounce long words which is related to her illness, but she still manage to make out her long words. She also listened to her swallowing and eating and advised us that Adelle is not facing any problem swallowing and we had a lesson about the different thickness of water or fluid if this problem were to start.


Adelle's appetite has gone from a high high to a low low. Nowadays eating has become a game and negotiation. In this regards, the doctor is not really concern as long as she is drinking enough fluid, which she does. Although he was concern about something related to her kidney function which is why he would like to do review next Friday in Perth.



The highlights......................



Friday night we got VIP tickets  to go watch a basketball match between Perth Wild cats and Titrain (spellling???) at the perth Arena. little did i know we had our own little corporate cubicle with our own waiter. When she saw that most kids were wearing the red T.shirt, she ofcourse wanted one so..... you know the rest. Adelle absolutely enjoyed the match and was screaming "defence" along with the crowd.





At 1 am the following morning we went to collect her Nana (my mum) and Grandma (Ben's mum) at the airport. She's been so excited to see them but was quite sleepy and tired. Nana and Grandma is here for help and support during this terrible time and just their presence has boost my hope and strength.  So far she's been showing off her skills to her nans..... how well she can add, subtract,  spell her surname Soopramanian, and the list goes on.




With her nans here she also had a second Christmas morning. Her aunties, godfather and cousins sent Christmas presents and she absolutely loved all her presents especially the teddybear backpack, the black slippers and handkerchiefs. These were all worn to church on Sunday.



In the afternoon it was off to the beach at the jetty but was a bit too cold to stay long.

Physically she's doing great, except for the slight dragging of the right leg when tired. She's making very good detailed drawings and writing her letters very neatly.

Since Adelle was diagnosed I've only told you all that Adelle has a brain tumor but never once mentioned the actual diagnosis. There was a reason. I was waiting for mum to get here to tell her myself. I did not want her to be alone for the dreadful news in Seychelles. Now I can tell you that Adelle has got Diffuse Intrinsic Pontine Glioma (DIPG), an extremely rare tumor that occurs mostly in children. I will leave it to you to google it up as it is too stressful to explain any further. I do however, STRONGLY request that you all remain discrete and make no comments about it in front of her, especially friends with children that goes to school with her. She is a very happy girl and I do all my crying when i am not around her or anybody for that matter. Although i would like to scream and hit something sometimes.

Thank you so far for all your kind words of support and prayers. Lets all keep praying for my sweet little/big baby girl. Miracles does happen otherwise they would not exist in the first place.


Friday, 20 September 2013

THE TIMELINE

The Beginning


30th October 2012 

"Hi,
I don't know if mum let you know already but we're at the children hospital awaiting the neurologist to do some investigation on a brain tumor they've found yesterday.

The tumor is in a very delicate area. I will keep you updated. Meanwhile I am making preparation to make mum and ben's mum to come up as we need the maximum help and support.

Take care"



27th November 2012

Hello 

Check out this blog. Adelle is in it. She had a wonderful time on Sunday, First met the with the wiggles, then Santa, then basket of surprises from my colleagues see photos


love
Helen
   


02nd December 2012

"Hello everyone
Just an update on Adelle....... It is only fair that you all know how she's doing.

On Thursday Adelle reached half way through her treatment. Fifteen more days to go.




Then, on Friday Adelle got a break from radiation as her machine was on servicing. As she was feeling fine with no dramas we got the go ahead from the doc, to go home for the long weekend we had. the 3 hours drive home was welcomed by all three of us (which we would normally complain) after spending about three weeks or more now away from home.
Back to school

On Friday she was so excited to be back at school. She got to participate in the nativity practice and just had a normal 5 year old day at school.  Her friends were so happy to see her and took very good care of her.  Saturday she was so happy to go back to her swimming lesson and as her motor skills have improved, she was swimming without any floats and was so happy that she could keep up with the others. Then afternoon we had a pizza time with her friend Anahera at the park.

At 6am on Munday she woke me up to bake cupcakes. How can I refuse such offer.

Later we went to her schools Christmas fete (after church of course) and to our surprise a special stall was dedicated to raise fund for her. My colleagues have gathered together one night and made little magnetic butterflies which were all so beautiful. (let me know if you want one i can post for you). I was in tears when i saw the stall. I'm very lucky to have such wonderful colleagues.
We had such a wonderful weekend and was so glad to be home again. She even can ride her bike again without trouble pedaling like she was having a few weeks ago.


The ride back to Perth was not really welcome but on the bright side we're half way to complete the treatment.

God is looking after our little one and she's enjoying every moment." 






About DIPG


Most people have never heard of this disease, because it is so rare. The name Diffuse Intrinsic Pontine Glioma basically tells you most of what it is. A glioma is a tumour of the brain originating from the cells that support the neurons, or thinking cells. The pons is an area of the brainstem which controls many vital functions of the human body as will be described.  A diffuse intrinsic tumour is one which grows inside the matter itself and not well localised to that area. So to sum it up, DIPG is a brain tumour found in one of the trickiest places of the brain, growing in a manner inconducive to surgery and affects to the child's breathing, heart function, sleep, swallowing, bladder control, hearing, equilibrium, taste, eye movement, facial expression and sensation and posture.In the US, brainstem gliomas have been reported to make up 2.4% of all intracranial tumors in adults and 9.4% of intracranial tumors in children. Brainstem gliomas account for approximately 10-20% of all childhood brain tumors. The incidence in adults is lower than that in children younger than 16 years. A tendency for brainstem gliomas to follow a more indolent course in adults than in children has been noted; in adults, these tumors are more likely to be low grade and remain localized.  

About the Pons

The central nervous system is composed of the brain lodged in the skull and the spinal cord in the spine. The brainstem is found at the back and below the brain, connecting the brain to the spinal cord. It is divided into 3 parts: the medulla, which is closest to the spinal cord, the midbrain adjacent to the brain and in between them, is the pons. The reason its called this is because it actually looks like a bridge!


Inside the pons so much stuff goes on. Simply stated, it acts as a relay station between the cortex where all the instructions are generated for the body to work, and the cerebellum where these instructions are modulated into smooth, sequential actions before it reaches the concerned part of the body. It also plays a role in dreaming. Being the site of origin of certain cranial nerves, called cranial nerve nuclei, any lesion of the pons can manifest in many forms:

CN V--The  Trigeminal nerve carries sensation from the face to the brain. Changes in sensation from the                    face may occur. As the mandibular nerve is a branch of the trigeminal, chewing is also affected.
CNVI-- The abducens nerve innervates the lateral rectus muscle, the muscle causing the eye to look                           outwards.  Hence converging squint on the side of the lesion is a common presentation
CNVII- Facial nerve-- changes in facial expression,  taste, tears and salivation.
CNVIII- Vestibulocochlear nerve--- hearing and equilibrium is affected, leading to instability on standing or walking and complaints of dizziness


The pons also deals with sleep, swallowing and bladder control, but more importantly, it has the pneumotaxic centre which controls changing from inspiration to expiration. Hence, lesions of the pons can present with breathless and difficulty breathing.


BRAINSTEM GLIOMAS

Brain tumors are not a single kind of tumor, but include several different tumor types.
As a group, these are the most common solid tumors in children less than 15 years of age, and account for approximately 20% of all cancers diagnosed in this population. Other important facts about tumors that occur in the brain and spinal cord include the following:
Tumors can arise at any age in any area of the brain and spinal cord, although some specific types of pediatric tumors tend to occur more often in certain parts of the brain.
Brain tumors are categorized by the type of malignant cell and by the area of the brain in which they develop.
The terms "benign" and "malignant" as usually applied to tumors are not as useful when describing CNS tumors. Because the brain and skull are located inside a fixed amount of space, even "benign" or slow-growing tumors can cause serious problems.
Most brain tumors tend NOT to “metastasize” or spread to distant areas to other parts of the body outside the brain and/or spinal cord (CNS). They do, however, tend to recur locally, or spread to other areas of the CNS.

These tumors have a predilection to originate from the left side. Most are located in the pons; however, medulla and midbrain may be involved as well. Brainstem gliomas are highly aggressive brain tumors. Anatomic location determines the presentation. With pontine lesions, cranial nerve or long tract signs are observed commonly.

Based on the histology (observation of the cells under the microscope following biopsy), the WHO has divided the brainstem gliomas  into 4 Grades based on nuclear atypia, vascular proliferation, mitoses and necrosis (grade 4). In simpler terms, the cells look abnormal, more blood vessels are proliferating, multiply too fast, die quickly

1- Benign: Juvenile pilocytic astrocytoma
2- Fibrillary: Diffuse astrocytoma
3- Anaplastic astrocytoma- has lack of structure in the cell
4- Glioblastoma multiforme- most serious kind

This classification is rarely used because brainstem gliomas are rarely biopsied.
Although biopsy or resection is not typically performed on brainstem gliomas, vascular endothelial growth factor (VEGF) receptors are an important pathway in the invasion and growth of supratentorial glioblastomas by promoting the growth of new blood vessels. Epidermal growth factor receptors (EGFR) are present in 25% of glioblastomas and are important in the growth of these tumours as well. The presence of these receptors may aid in the response to various targeted therapies.


Symptoms and signs
  • Double vision, abnormal eye movements or squinting
  • Weakness in arms or legs
  • Unsteady gait; problems with walking and coordination
  • Difficulty in swallowing
  • Dysarthria- slurred speech
  • Headache
  • Drowsiness
  • Nausea, and vomiting.
  •  Rarely, behavioral changes or seizures may be seen in children. 
  • Older children may have deterioration of handwriting and speech.
  • Pontine lesions usually present with any or all of the above signs and symptoms, depending on location and extension. 
  • Midbrain and lower brainstem/upper spinal cord signs and symptoms may be seen with extension of the neoplasm to involve these structures.
  • Tectal lesions typically present with headache, nausea, and vomiting.
  • Hydrocephalus is a common presentation, especially for tumors in periaqueductal or fourth ventricle outflow locations, because these regions have less tolerance of growth and higher risk of obstructive hydrocephalus.
  • Cervicomedullary lesions usually present with dysphagia, unsteadiness, nasal speech, vomiting, and weakness.

Morbidity and mortality

Morbidity is due to the location of the space-occupying lesion and compression of surrounding structures; because these structures regulate basic body functions of blood pressure, respiration, and swallowing as well as motor and sensory functions, compression can produce substantial neurological disability.
Sudden death can result from increased intracranial pressure and subsequent cerebral herniation. This may be a consequence either of edema induced by the tumor or of hemorrhage into the neopla


Cause for DIPG

So far,  nobody knows. As usual, there are many theories out there being tested, but the fact remains that we are still in the dark on this disease. No familial tendency is predominant overall, no genetic or molecular marker hace beein recognised. There is some increased (14%) in patients with pre-existing Neurofibromatosis and also in those who recieved irradiation for tinea capitis, but the evidence is not concrete.

What Investigations are generally done?

  • Lab studies of blood chemistry and related body fluids are not helpful as a rule, 
  • A lumbar pucture is needed to obtain a sample of cerebrospinal fluid (the clear fluid which bathes the brain and spinal cord) CSF examination is often important for differential diagnosis. The protein content of CSF may be elevated. Because of the risk of increased intracranial pressure due to obstructive hydrocephalus, caution in clinical and imaging assessment prior to lumbar puncture is stressed.
  • Tissue confirmation is frequently not feasible with infiltrating, expansile tumors, i.e tumours growing into the matter of the brainstem and which are not well localised. Unless an exophytic component exists, and even then, biopsy cannot always be obtained.
Imaging

MRI is the diagnostic test of choice, but CT scan can also be done


Sample MRI. Source: google images

Procedures

Patients with hydrocephalus, a condition where CSF has built up in the ventricles of the brain because of block in its drainage or increased CSF production, may require ventriculostomy or ventriculoperitoneal shunting for symptomatic relief.
Patients with difficulties in swallowing and diminished gag reflex may need feeding by gastrostomy such as the percutaneous esophagogastrostomy (PEG).
Those patients who have had multiple upper respiratory infections, pneumonia, or altered voice may need postoperative ventilatory assistance


Management

Treatment of brainstem gliomas has been frustrating; at this point, new therapies have yielded little benefit over conventional treatment with radiotherapy alone.

Adjuvant chemotherapy is not used in children because efficacy has not been proven. Data have suggested that preradiation chemotherapy may improve survival in pediatric diffuse intrinsic brainstem gliomas. Its efficacy in adults is similarly unproven, and at present, postradiotherapy adjuvant chemotherapy cannot be recommended. The effectiveness of combined radiotherapy and chemotherapy (typically temozolomide) has not been thoroughly evaluated. The effectiveness of chemotherapy at relapse is uncertain, but it may benefit some patients.

Chemotherapy options, when considered for use in brainstem gliomas, may include conventional agents such as temozolomide and carboplatin/vincristine. Antiangiogenesis agents have been used with success in supratentorial glioblastomas. These include thalidomide and bevacizumab. Bevacizumab is a VEGF receptor inhibitor, approved as monotherapy for recurrent glioblastoma multiforme in May 2009. Drugs (such as erlotinib) targeted against EGFR, when present, have been modestly effective in supratentorial glioblastoma. If chemotherapy is desired adjuvantly or concurrently with radiotherapy, particularly in the pediatric population, the physician should consider entrance into a clinical trial.

Focal radiotherapy is the cornerstone of treatment of brainstem gliomas and can improve or stabilize the patient's condition. The conventional dose of radiotherapy ranges from 54-60 Gy, with doses up to 72 Gy given with hyperfractionation. At present, no benefit has been demonstrated with doses greater than 72 Gy; however, this therapy has not demonstrated efficacy in children.

Response to radiotherapy, in addition to the dose of radiation, depends on several variables such as tumor location, histologic type, and response to early treatment. Patients who underwent radiation therapy for exophytic tumors have been reported to have better survival rates than those treated for tumors without an exophytic component.

Radiotherapy should be administered to any patient with significant and progressive neurologic symptoms. Some adult patients with a tectal or cervicomedullary lesion, or with mild symptoms of long duration, may be candidates for observation alone; radiotherapy can be reserved for patients with clear evidence of tumor progression.

Surgery

Typically, biopsy and/or surgery are not required for diagnosis or treatment of diffuse intrinsic pontine or tectal gliomas and cannot be recommended routinely; diagnosis can be made by MRI alone.

Who to see?

Neuro-oncologist: The neuro-oncologist should be the primary physician supervising the care of these patients. If a neuro-oncologist is not available, a medical oncologist with expertise in treating brain tumors may be consulted for guidance. Otherwise, the patient should be referred to a reputable institution that specializes in the care of patients with CNS neoplasms.
Neurosurgeon: The treating neurosurgeon should have significant experience in resection of CNS neoplasms.
Radiation oncologist
Neuropathologist
Neuroradiologist
Neuropsychologist for pretreatment and posttreatment evaluations, when clinically indicated
Rehabilitation medicine specialist

Source of information:

 Medscape