MRI results and emotions

Less than one minute read time.

FormerMember

22 May 2015

We have had a good start to our week, we had our MRI results which showed Kee's tumour is stable and has shrunk, her eyes have improved, but aren't perfect. But we got the ok to go to disney so we have booked for all 6 of us to go in June and we are looking forward to that, fingers crossed things stay as they are so we can enjoy it properly.

I now also feel so selfish for feeling overwhelmed when she is the one going through this dreadful disease and these awful medications, but having 4 small children all under the age of 6 and one being terminally ill is beyond anything I ever thought I would imagine to have to endure. Today is better my husband spoke to his work about compassionate leave and it seemed positive that he would get some paid leave to help me during this.

For now I live day by day, I don't want to think of the future. I can't stand the thought she might not make it to christmas or even her 6th birthday in August.

For now I live for today.

FormerMember over 9 years ago

Dear Penny

I have just been through some intensive radiation myself, but my situation pales into insignificance compared to yours. The bonds between a mother and child are the most strong of all personal ties, and so please don't think of yourself as selfish. On the contrary your attitude is exemplary. Your trip to Disney will be amazing and you and your family will enjoy every minute i'm sure.
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FormerMember over 9 years ago

Dear penny

it is natural to feel like you are, my daughter is 31 and just been diagnoised with grade 3 brain tumour she will be starting radiotherapy and chemo in next couple of weeks,I like you feel totally overwhelmed with the whole thing, the amount of differant emotions I've been through is unbelievable, it must be so hard for you with your little one being so young, sending love to you and all your family xx
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FormerMember over 9 years ago

Hi JJ, how did your RT go? Keeley had to be put to sleep before each one so she stayed still, we also experienced some hair loss at the back on her head, but we can hide this with the rest of her hair. Thank you very much x

Hi Rose, I am so sorry to hear about your daughter too, which type of brain tumour is it do you know? Keeleys is situated in her brain stem. Thank you for the kind message, will add your daughter to our prayers x
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FormerMember over 9 years ago

Hi penny,

my daughter Joanne has a grade 3 glioma which is situated very near to brain stem and close to nerve so been told to dangerous to remove it, we got to know more on Wednesday when we meet her consultant that will be treating her nearer to home. We have been told life expectancy is approximately a year to two years depending on success do radiotherapy and chemo. Like you I'm just living for today, cannot think of what the future could hold. Your little one is so young I can only imagine what you and the family must be going through xx love to you all xxx
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FormerMember over 9 years ago

Hi Rose,

Keeley too, completely inoperable. Keeleys RT was a success in shrinking and stabilizing the tumour, but sadly this won't last forever and the tumour will regrow, we will try RT again but the results are usually not as good as first time. We were given 9 months, but we really want her to make it to christmas which is 10 months from diagnosis. If things do start to go downhill we will probably do a mock christmas for her.

Stay Strong, Penny xxx
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