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By @enablingevie, May 24 2012 08:20PM

OK so no chemo this wk! Her bloods have shown that she hasnt recovered enough from her nasty infection and therefore she is too poorly to undergo the aggressive chemo treatment!!

After an impromptu conversation with her Dr at The Royal London, we have good and bad news! As it stands, Evie should have the same sight in one of her eyes as any normal child! that is If the tumours don't change! However there is a 50\50 chance of them growing again since there are grey areas in both eyes which means the tissues are not dead cells and could regrow! If they do regrow then we have to make decisions on how to treat them again :( She could have chemo plates placed directly into the eye to kill the tumour or she could have laser treatment which would definitely kill tumours but will remove her central vision! So incredibly hard to think that these are potential options for our precious little girl. She will be checked every 6-8wks to keep track of the situation! She has had a rough couple of days with the insertion of the NJ tube and lots of interfering and poking around. As you can imagine its been a hard few days- add to the fact sitting in a sweatbox of a hospital :(

Home now for a couple of days and then back to the Chase for the last week with them :( We will miss them soooooo much :(

Very drained this week.

much love to all our friends and supporters

Aimey and James

xxxx

By @enablingevie, May 21 2012 05:03PM

So another eventful few days in the life of Evie Shears. After somehow contracting an infection in her hickman line (the permanent tube used for administering chemotherapy) Evie had to leave the lovely Chase hospice for a few days stay back in Epsom hospital. After dosing full of antibiotics (of course on top of the numerous other medications) the infection is being cleared and back to the Chase it was for the weekend. Of course side effects of antibiotics= stomach cramps, side effects of chemo= stomach cramps, side effects of other drugs = stomach cramps! Guess stomach cramps aren't going away yet :(

A busy weekend in there so lots of busy staff but home today for a flat full of community staff and a visit from Auntie Jodie. Feeling pretty rotten today and Evie managed to pull out her tube again. Thankfully the community nurse was due to visit so could help put it back in. Bloods taken today and with all fingers and toes crossed, little Evie will be well enough to have her examination under anaesthetic on Wednesday as well as fitting an NJ tube (Naso-jejenal) to see if a new way of feeding eleviates some of her discomfort. Then fingers crossed ahead with Chemo number 5 on Thursday. If all goes to plan then home for the weekend and just one last week at the Chase next week :(

thanks to all those who are still driving the fundraising forces.

So many lovely events in the pipeline- please remember to email enablingevie@gmail.com if you have an event you want added to the website.

All you tweeters remember to retweet :)

will let you know if all plans go ahead.

lots of love to all

Jodie xx

By @enablingevie, May 15 2012 09:22PM

Sorry there hasn't been an update for a while. Things have been changing so quickly that it made sense to leave it a while before we knew where we were.

So...

this will be the 3rd week in the Shooting Star CHASE hospice and things seem to be grinding to a halt once again :(

The stay in the hospice is aimed to get on top of managing Evie's feed and continuous discomfort. After many discussions and trials and errors Evie has now been put on a continuous ng feed (nasogastric). This means that she is attached to the feeding pump for most of the day and night. This has had some positive effect in that Evie is no longer vomitting as much as she was after each feed. However, Evie has constant discomfort as she feeds as it increases the severity of her stomach spasms and her reflux so less vomit unfortunately means more discomfort :(

The hospice have been completely amazing and Evie has been in the kind hands of some truly wonderful people. She even met a little dog last week who came in for some Pet therapy. Lots of feet licking :)

Chemo session 4 took place and although feeling very sickly, all should still be on track for session 5 on the 24th May.

So the hospice is trying to help with managing Evie's symptoms - of which the list is endless. So the feeding has been addressed again this week as although no longer losing weight, little Evie isn't putting much on either. The doctors at the hospice feel that it may be necessary to head back into hospital to see how to go forward with alternative methods of feeding that try to help ease Evie's pain and discomfort with such a basic life skill. Also more changes to medication which have their own side effects. Life is so very hard right now. Not really sure of what happens next- care needs to be better co-ordinated with the local community NHS service. Hmmmmm don't hold your breaths!

The sun came out when everyone arrived back at the hospice on Sunday and Evie is definitely her parents child with seeking comfort and pleasure in the warm sun on her face.

Today Mummy and Evie did some finger painting too :)

more photos have been uploaded to the website. Evie is now on twitter too- all you tweeters out there please RT and raise awareness of the website :) More events have been added to the calender too. Everyone has been truly amazing with their efforts :)

Will update again over the weekend once we know the next plan of action.

much love and cuddles as always

Jodie

xx




By @enablingevie, May 1 2012 07:35PM

So first couple of days in The Shooting Star Children's Hospice, Chase. What a lovely place with lovely staff. Mummy and Daddy are able to get some sleep with a bit of luck whilst the lovely staff take care of Evie. Evie will be monitored 24hrs a day: with staff checking on her fluid balance; when drugs are given,; when feeds are given, and how little Evie reacts and responds at different times of the day. This will hopefully give us more of an indication of how we begin to manage Evie's vomiting and reflux and terrible discomfort. Evie has lost a little weight which isn't the greatest news but with any luck she can still go ahead with Chemo session 4 this Thursday. She had a lovely girls night with Mummy and Auntie Kate on Friday and had a chance to wear her pretty dress on Saturday. Lots of people are getting the ball rolling with their own fundraising events which is fantastic news and so incredibly generous. Please email us on enablingevie@gmail.com if you have an event coming up so we can share your great efforts here on the website. We are still working on setting up the Trust Fund however if you would like to offer a donation, please do email enablingevie@gmail.com and we can discuss how you can do this now.

So proud of my lovely friends Aimey and James and can't wait for snuggles with Evie on Wednesday.

love you all

Jodes xx

By @enablingevie, Apr 25 2012 08:19PM

Happy Birthday James :) love Jodes xx


Message from Aimey and James:


hi everyone, James and I cannot believe how many people have been in touch about fundraising! It really is just completely overwhelming! The big question is how do we hope to put the funds to use and the answer is 'very carefully'! I am researching a great deal about 'brain injured children' and have a lot more to discover. America seems to offer a great deal of insight and specialist care and some of it can be applied now but most of it will be over the next ten years! Evie may be able to benefit from developments in stem cell advancements, revolutionary spinal surgery, cancer treatments, but most of my interest is with an institute in Philadelphia for the achievement of human potential, I don't want to be 'fooled' by false hope. There is also a centre called 'Footsteps' which is intensive physio which has been recommended by someone who's 6yr old daughter has just learned to crawl for the first time though they were told she never would! We are also looking into private consultants specialising in gastroenterology as well as neurology as the NHS seems to stand for 'No Hope Service'. Once again thank you in advance and hold fire with your generosity until the accounts are set up to ensure we can ensure everything is well and truely secured x


Please remember to email enablingevie@gmail.com to let us know about your fundraising events so we can add them to the website and everyone can know about your great efforts :) x

By @enablingevie, Apr 23 2012 10:04PM

After three weeks with no help from social services it seems we may finally be getting some support in the home for mum and baby possibly 3-4 hrs a day (cheers for that) !! Evie is a 24hr girl and probably will be for life, due to her issues with discomfort of her muscles and general irritation (well known that children with cerebral palsy never learn how to sleep properly unless sedated). Sleep deprivation is at its max now, for Evie and for James and I. Evie had her bloods taken today, a nurse comes to the flat, and we have a little yellow sharps bin for the needles etc to go in! makes my tummy turn! the results show she has low neutrophils which means effectively no immune system, which is expected at this point, so hand sanitiser and antibacterial spray at the ready!! No one with colds or germs can come near! Evie is still struggling with her feeds but the dietician seems wonderful and so empathetic of the situation. fingers crossed we can get her feeds up to 4 hourly as at the moment she is fed every 3 hrs day and night (each feed taking 45mins through a milk pump into her NG tube)when we are suppossed to attempt sleep is beyond me!! James had the pleasure of putting her NG tube in today for the first time, we just couldnt face a three hour wait in A & E again to have it put back! Well done daddy Shears, it was very hard for you to do but Evie knew you were doing it so that it could be done with love and care and by loving gentle hands xxx Aimey xxx

By @enablingevie, Apr 20 2012 08:15PM

Feeding update:

The doctors have decided to change Evie's feed to Neocate to see if she has an allergy to normal milk. She has only put on 200grams in two weeks and she consistently vomits after every feed on her current milk. Aimey been researching about the drug 'Domperidone' and its use for reflux. Evie is currently taking this 30 minutes before her feed. There appears to be little evidence of its effectiveness and some report that it can cause stomach spasms! This is standardly prescribed, however there is no certainty that it is helping Evie. If anyone has any thoughts or findings of any of the above- please let us know. Medical minefield!!

By @enablingevie, Apr 20 2012 09:32AM

Homeware and Jewellery Sale in Essex today. Please see events page for more details :)

By @enablingevie, Apr 18 2012 08:38PM

Finally able to have examination under anaesthetic today at the Royal London Hospital. Scan revealed the tumours appear to be responding positively to the chemotherapy and are flatter than initially, Now we need them to shrink in width so we can give Evie the best chance of having some sight., Finally some positive news. xxxx

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