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.
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