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Losing a child to AML

This is a long story so please bare with me.
In 2018 my 2nd grandson was born and we made the decision to move closer by after living 2,400 kms away for 16yrs. We were close to retiring & wanted to spend the next stage of our lives near our kids & g’kids We were so excited & finally made the move in 2019.
Our 2 most precious g’kids had their 1st sleepovers with us. Such an amazing time & great being able to give their parents a break.
Our Acute Myeloid Leukaemia journey started when Our 2nd grandson was 18mths old & was diagnosed with Acute Myeloid Leukaemia. This doesn’t happen, not our family. We were scared & thought we were going to lose him. Our hopes were high, we also had a doctor telling us the ‘prognosis for kids is great, blood cancer is the best one to get’-yeah right! Why would anyone say that. Really! No cancer is ok. Both sets of g’parents jumped in, shuttling back & forth, a roster for hospital sleepovers with Grandson, caring for his big brother & a meals roster. Jan2020 he was in remission. Yay, we were having a fabulous time, swimming, sleepovers, so much fun.
Then he relapsed in Jun2020. Here we go again. A Bone Marrow Transplant was needed interstate to save his life. His 4yr old brother would need to stay home under the care of his 2 sets of g’parents so he could have some stability. Having the 4yr old was tiring but so much fun and fulfilling for both pairs of g’parents. We managed so well. We FaceTimed with His brother and parents almost everyday for 10wks.
COVID restriction were on and off but we Were able to travel interstate for Xmas and spent lots of time with them all.
We had a beautiful Xmas together, Lots of presents & unbeknown to us at the time this would be our last Xmas together.
We spent 4 weeks together, we decided to celebrated Our grandson 3rd B’day 2 weeks early. Wow, in hindsight, glad we did this. He was so excited & so were we. Happy G’parents.
We then received the news we never wanted to hear about our precious little boy. His Acute Myeloid Leukaemia was progressing too fast and he had no life saving options left. He was to be airlifted back home for palliative care. The most unbelievable & devastating news & it was happening to our little man. The last night before being airlifted home I was able to help my daughter and stay overnight and my little grandson. We spent lots of time cuddling and he was in so much pain, I said to him ‘I’m so sorry you are in so much pain, I wish I could make it better’, his reply was ‘me too’. My heart was breaking. Fortunately with COVID we could still cross the border to home with just. Border crossing permit and no isolation involved.
Having him home & so happy to be in his own bed, in his own room. Our home is 40mins away so we parked our camper at the nearest campsite. We did as much as we could to help out & see Him as much as possible. It was so beautiful to see him at home laughing & playing, helping, playing on his Grampa’s phone. He had his true 3rd b’day. It was so hard for us to leave at the end of each day.
He passed 2 days after his b’day. We were crushed & devastated to lose him. So many dreams & things we wanted to do with the boys. Our hearts were not only breaking for ourselves but also our beautiful daughter, our son-in-law & his brother. It just seemed wrong. So much love in this family but was it going to be enough to get us thro. Our life was not going to be the same anymore & never will be. Living the new normal without or grandson is so hard, lots of anger and sadness. I know he is always around us. He shows us little signs on most days. He is our rainbow boy.
It’s been 11mths now and Christmas is here again. I’m not really looking forward to it without him. It’s so hard to know what to do. His big brother keeps us pretty grounded and wants all our Christmas tree as to go up. It’s just on the day. It’s going to be so hard without him 🥲

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Hello Granny - Just Reading through your post early here in the UK (I think you may be in Australia?) - my heart goes out to you so much and I am so sorry for the loss you have had of your little grandson and the continuing reality of that loss - I am glad you shared your experience and feelings with us as much care and compassion will come to you from this community. Your little grandson had a special family around him, you all gave him so much love and an environment of safety and support, in a circumstance when that’s all you can do, but it’s a precious thing, a true gift for him. I feel greatly for your loss and all you experienced in seeing him go through so much, and send care from me x x

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Hi Jilly,
Thank you so much for your kind words. Have you experienced something similar? I have a sad spot in my heart and Christmas is going to be pretty tough.

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Hello again - I have experienced losing loved ones from cancer but all as adults, so I know the sadness that comes when not able to rectify and solve the suffering going on with someone loved - and have in those times thought goodness how would this be if it was my child or grandchild hence extra feeling for you x

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I can’t even begin to imagine how difficult this journey was for all of you and I wish I had the words to get across just how sorry I am for you all. He sounded like an amazing grandson! You support each other so well and you will continue to do so. I’m glad you found us as sometimes it’s hard to share how you really feel with those closest to you X

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Dear @Granny, thank you so much for reaching out to us here and I hope that you already feel the support you have from our community. We send our sincere sympathies to you and your family. The support and love you gave to your Grandson was incredible. This time of year can be so very hard for those who have lost loved ones. I do hope you are all getting the support you need? If you do need any further support, you can contact the Support Services Team Blood cancer information and support by phone and email | Blood Cancer UK Take good care Gemma

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Oh @Granny thank you so much for being part of our forum and having the courage to post.
I am so, so sorry I do not know how you cope with the loss of such a special grandson.
What came out of your post was how you all worked together as one family to do everything you could emotionally, to give stability and practically for both your grandchildren and their parents.
Life and treatment can be so unfair and cruel and yes, with one so perfect, young and innocent it makes it so much worse, somehow.
Anniversaries and festivities are so difficult to get through, but somehow we do and perhaps his big brother needs to celebrate Christmas and to remember his brother with love and not resentment.
Perhaps keep talking as a family how you are all experiencing and coping with your grief
Your rainbow boy sounds so special.
Please let us know how you are doing @Granny

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Thank you Gemma :heart: I have been struggling to find a platform to share with those in a similar circumstance. It would be so nice to know how others get through the holidays especially Christmas.

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Hi Erica, thank you, so nice to hear your comments. The last 11 months have been tough but I am doing well. Thankfully as a family we do talk about our grandson a lot. My son in law keeps to himself which has been hard.
We don’t get to see the older grandson very much now, not because we don’t try but my daughter doesn’t like to be away from him for too long, which is understandable. So we not only have lost our grandson to Leukaemia but we have also lost the closeness with the older one. It is slowly improving tho :crossed_fingers:
My husband and I have a close relationship with the in-laws and we do spend time together :heart: And have a good catch up and share :heart:

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I am truly sorry to hear of your loss @Granny. I can only imagine how much your little grandson must be missed.
It’s good to hear that your closeness with your older grandson is improving.
You ask how others cope during Christmas so I just wanted to share some resources from The Compassionate Friends, here Coping with Christmas 2021 (tcf.org.uk)
and from Cruse, here Christmas - Cruse Bereavement Support, just in case they might be any use for you to read through.
We are only at the end of the phone if you ever want to talk things through with us.

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Thank you Alice, the support information was really helpful to read.
I am in Australia so a phone call is not so easy.
Having everyone’s support here is great :kissing_heart:

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OMG, I have just had a phone call with my sister telling her how I was feeling about Christmas and her reply was ‘you need to get over it and move on’ 🥲 I couldn’t get off the phone fast enough. So sad :disappointed:

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Oh @Granny I am not surprised that you are feeling sad and perhaps very hurt.
We all grieve in different ways and don’t forget how very close you were to your grandsons and family and you are grieving the loss of both of your grandsons in a way.
Anniversaries and times of celebrations are especially hard.
My sister has never been able to take my feelings either.
It is sad and another loss but perhaps just give that relationship time.
You have family and in law support and don’t forget we are all here for you.
Take your time and be kind to yourselves.

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Hi Erica, thank you. Sadly I don’t think my sister will change. You are so right I have some special people around me that are supportive :heart:
I made some Christmas gift cards today and put a little unicorn :unicorn: and rainbow :rainbow: in the bottom corner, just to feel mu little grandson is with me getting things ready and for on the day :heart:

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That’s just awful @Granny and must have been a tough conversation. You just take good care of yourself. We are all here for you X

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Oh @Granny your Christmas gift cards sound absolutely beautiful and what an wonderful idea and yes, I bet your little grandson is always with you.
Perhaps just surround yourself with your very special people and you can support each other.
Look after yourselves

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Hi @Granny and @Jilly20 don’t forget this forum and the Blood Cancer UK support line is there for you, and everyone grieves differently.
Be kind to yourself

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