Lost my 8 week old - Brain Tumor

[G18241]

Last Sunday me and my wife lost our gorgeous 8 week old daughter, Ivy, to a brain tumor.

She had been for her 6 week scan a few weeks ago and the doctor noted that her head was above the average size, and asked for us to go back the week after to re-check it. So 2 Tuesday's ago we took her back and her head circumference had grown 3cm so we were told to go to the children's hospital. We feared it may have just been a build up of water which would have been able to be rectified with a drain inserted into the back of her head. We went for a CT scan with her and the results came back that she had a brain tumor, which pretty much covered half of her brain.

She went in for the operation the morning after and only just made it through, having to have CPR for a few minutes afterwards.

It got to Friday and the conversation was had to cease her life support as IF she even got through the recovery, her quality of life would be minimal, and the tumor WOULD eventually get her. She had started having seizures and was sedated and pumped full of different drugs to try and stabilize these. Her breathing support was removed Friday evening, but she continued breathing on her own, though still heavily sedated and being given the anti-seizure drugs.

We were moved to Bluebell Wood Children's Hospice Friday night once her breathing support was removed to be able to spend whatever time we had left with her in a more comfortable atmosphere, without all the tubes and machines. She literally had 1 tube which was providing her with the needed drugs to keep her comfortable, in a portable unit which meant we could give her cuddles and actually move around with her, which we had not been able to do for days. Sunday morning we were given a pram so we could take her outside, and jumped at the chance to try and do something "normal"

After a lovely walk around the grounds we went back to our room and laid back in bed, at which point our little princess decided it was time to finally go to sleep.

We cannot thank the hospice enough for what they gave us in those last few days, they gave us the opportunity to actually hold our daughter and the staff there were so helpful, and continue to be so.

We have set up a just-giving page to raise money for the hospice, as it is only 10% government funded. It is awful that a place like this NEEDS to exist, but we are so glad it does, as we managed to say goodbye to our little girl and a calm and peaceful environment.

We have had a fantastic response by friends and family sharing this around social media, but after speaking to the mods, they have allowed me to also post it up on here to try and reach as many people as we can.

Ivy's funeral is this Friday and we are trying to raise as much as we can for the hospice before then. Ivy is currently still at bluebell wood, where we have an adjoining room which we can go and stay at anytime we want, which again, is invaluable.

https://www.justgiving.com/fundraising/Gary-Morris18241

http://www.bluebellwood.org/

Thank you in advance for anyone kind enough to donate and / or share this story and just giving page, and thank you to the mods for allowing this

 

[G18241]

Thank you all for your kind words, and some of the very generous donations

 

[G18241]

Genuinely heartbreaking mate. Made a small donation and in tears. I hope meeting your target will bring you and your wife some small amount of comfort at this incredibly difficult time. God bless you.

RIP Ivy :'(

Thanks mate

I actually keep knocking the target up, it started at £500 which i never expected to hit!

 

[G18241]

I am touched by the amount of kind words this forum has given myself and my wife, and cannot thank you all enough for the donations towards our collection for the hospice

 

[G18241]

You lot are fantastic just hit £4000!

Had someone from the local newspaper contact me through fcebook asking for an interview regarding how much we have raised.

Im going to once again bump the target up a little as i dont want people to see we have hit the target and not donate, no amount of money we raise for this place will ever be enough to thank them for what they gave us on those precious last hours.

Again, thank you all so much, i will ensure the forum is mentioned for any thanks we receive

 

[G18241]

We have just had a call from the local newspaper, and they are going to put a story in which is hopefully going to get the hospice a lot of publicity, as well as hopefully more donations

Thank you all again, we have just hit the £4200 mark!

 

[G18241]

Spoke to the reporter yesterday and again this morning, our story is being put on the front page of the local newspaper tomorrow

Hopefully this will draw some attention to the hospital and hospice and get people doing more fundraising events etc. The just giving page is to be put on there (as well as linked on the online version) so i really, really hope we can reach a good amount before Friday, even though i will continue to try and raise as much as i can after we have said our final goodbye to our princess

 

[G18241]

The story is actually the full front page of the local Star newspaper

We seem to have had a fair few donations because of it as well

Thank you all once more for the support and donations

 

[G18241]

Without wishing to sound insensitive, I was expecting to see major swelling but she just looks like a healthy little girl. Very sad story and I wish you both the best.

The tumor was to the back of her head, so from the front she looks quite "normal"

 

[G18241]

We have just gone past £5k!

I keep saying it but thank you all so much, it really does mean a lot to myself and my wife that we have been able to do this for the hospice, and to have such kind words of support and donatioms from people, for the majority, i have never even spoken too, never mind met, is just so heart warming

We have just arrived at bluebell wood to spend the night here ready for the funeral tomorrow. Her basket that she will be in when we say goodbye is already here and the staff are going to help us move her across to that tonight

 

[G18241]

We have also now smashed the £6k mark with all the donations made at Ivy's funeral yesterday!

We have had phone calls and Facebook messages from other magazines and newspapers as well so really hope we can get this country wide to raise as much awareness for the hospice as possible

 

[G18241]

The fundraising has slowed down a little over the past few days so think we have reached as many people as we were able too just relying on friends and family spreading the word.

We are now looking at doing actual fundraising events in and around Sheffield

Bluebell wood are still offering us the support we need after Ivy's funeral, some of the staff even turned up on the day, and we have the option of counseling sessions down there any time we want them, i cannot express how fantastic the staff at this place are

 

[G18241]

I must say that you're taking this a hell of a lot better than I think I could.

I don't know how you have the strength, it really does amaze me.

The fund raising and organising the funeral had kept us busy, yesterday was the first real day we were just at home alone and we just couldnt cope a little girl came round trick or treating (early i know!) and i just broke down

 

[G18241]

Just wanted to let you all see the below email that i received today, Thank you all again so so much, this was clearly a phenomenal amount that we were able to raise

 

[G18241]

I just wanted to post an update in here after everyone's kind words.

It is 2 months today that we lost Ivy, and she would have been 4 months old tomorrow. The last 2 months have been the hardest of my life, and every single day is a struggle. Even though i am now back at work, i am no where near the man i was the previous 2 months, and doubt i ever will be. My wife is also going back to work in the new year, but Christmas is going to be a very difficult time for us. We still have presents that we had very eagerly bought Ivy for Christmas that we just cant part with, as well as cards for grandparents which we think we are still going hand out.

The just giving page has just hit £6500, which is just incredible and i want to thank everyone on here again for that, this is also partially a shameless bump as well in case anyone felt they may want to add to the page. We have quite a few people donating instead of sending xmas cards and we have also had people donate cakes and other items to raffle off, so i think we have another couple of hundred to add to that total.

https://www.justgiving.com/fundraising/Gary-Morris18241

Merry Christmas to everyone, make sure you spend every moment available with your loved ones, as that time is the most precious thing you can ever have

 

[G18241]

I'm so so sorry for your loss.

My daughter has spent around half of her life in hospital, and has already had operations totally 20ish hours. She's still very ill, and currently in hospital again. I'm terrified that we'll end up in the same situation as yourself - you seem to be holding up way better than we are.

I'm not at all mate, i seriously don't know how i get through days at work, and have physically had to cut the amount i was drinking as i felt it was becoming a problem. I hope your little girl gets better, as i would not wish what i have gone through of my worst of enemies, for no use of a better phrase

 

[G18241]

I just wanted to post in here again with a bit of an update.

Just before Christmas we found out we were pregnant again, only to find out yesterday that we had also lost this baby Was awful timing as yesterday also marked 3 months since we lost Ivy He/She was our 3rd miscarriage and have now been referred for some testing to find out why exactly it seems to keep happening.

On a slightly brighter note, i have previously posted an email that we received stating we were in the top1% of fundraisers throughout the month...well i received the below today, on what would have been Ivy's 5th month with us



I have said it many times throughout this thread, but just wanted to again thank you all for the generous donations, and cannot believe we have managed such an achievement having only started half way through October!

 

[G18241]

Apologies for the bump, but i'm having a really hard time at the minute and feel I can express myself on here, and i didn't want to create a new thread as i didn't really want to explain everything again.

It's Ivy's birthday this Thursday, and these past few weeks i've just been a complete mess since the 17th of last month i've just been dreading this day coming and it's getting closer and closer. My anxiety has been through the roof, and i've started having regular anxiety attacks. We still have our weekly counseling sessions at bluebell wood which i have no idea where i would be now without them. My depression has hit a low, to the point i'm off to see my GP on Tuesday to talk about possibly going onto some medication, the recent stories in the news about other families going through horrible times with their children has really knocked me back as well .The thing that's making everything really difficult is i cannot have anytime off work paid, as i had to use my 2 weeks of sick pay i'm allowed when she passed away, as i was only entitled to 3 days.

We have recently been to the hospital for the results of a number of tests we have had to see why we keep having the miscarriages, and have been told we can start trying again, but the wife will have to have daily injections to help with the problems we seem to have...which is a small price to pay if it means we can carry another baby full term, and we will be having scans every 2 weeks which has eased our mind a little

We don't know what we are going to do Thursday, I have booked Wednesday to Friday off work as there isn't a chance i could go to work...i don't know how im going to cope with tomorrow and Tuesday in all fairness. We don't know whether we want to have a party for her, whether we go to Whitby as it was the only place out of Sheffield we ever took her, so it was her "holiday", or whether we are just going to lock the doors and stay in the house on our own all day...i think we are just going to see what we feel like on the day.

I want to thank everyone again for the support on here, the money raised really does go to such a good cause and i am forever grateful for the donations, as well as allowing me to use this forum to vent my feelings, which i generally can only speak to my wife and counselor about.

Sorry for the long post, but i already feel better having gotten some of this out

 

[G18241]

Well you're doing the right thing - talking and seeking proper medical help. That's a big step and something a lot of people don't have the strength to do. I don't know how your wife is doing but - don't forget that talking to her is something that can help both of you. I know a lot of us blokes tend to keep things bottled up.

I can't imagine how awful Thursday will be but, maybe Whitby will be a good thing. You can remember the fun and the great memories you had there.

Wishing you the best of luck for the future too.

Wife has been off work for about 4 months as her employer is paying her full, that runs out in about a month though so she is looking at going back on a phased return...i'm looking for a new job myself as the one i am in is just causing me too much stress and my boss doesn't really seem to care

 

[G18241]

Thank you all for your kind words

Well I've just been to the GP and didn't find it much help to be fair. He asked me what i wanted and i just don't know...my 2 options are literally carry on as i am and try and work through it, or medication...he's sent me away to think about the latter.

I cannot have anymore time off work as i was only entitled to 2 weeks statutory sick pay, i've asked about it, and its apparently on a rolling 12 month so it doesn't "renew" until the end of October. Time off work would be brilliant to just chill out a bit and try and work out what i want to do going forward. I am currently looking for another job, but i'm on a decent wage (all be it, on 10 hour days which don't help, and am then on call when i get home and over the weekends) and i can't also be having money worries, so i'm literally stuck between a rock and a hard place.

The wife has bought Ivy a Birthday card today...i don't know whether or not i want to also buy her one, i don't know what i'd write in one if i did get one, my head's just a mess after a bad day at work, a frustrating trip to the GP and the constant thoughts of the days to come pinging around in my head