• Samantha Lehmann

Please don't wait to do things tomorrow, tomorrow is just not guaranteed!

I watched my parents get on with their lives after we lost my brother Warwick.They tried for 7 years to have him only to bury him 35 years later. Warwick's death devastated us as a family like nothing else. They got through this time with the love and support of each other, my brother Alistair and I and some amazing and comforting friends and family. But they were never the same. When we have children we know it is our responsibility to protect them, love them and raise them to become independent adults some day. No parents ever wants to outlive their child.

Unfortunately there are many families that experience this cruel and unfair fate, Today I interviewed an amazing , inspiring and courageous mother Marisa who has had to endure this unbearable sadness of burying her beautiful son Marcus at age 9. Marisa has openly shared her story to help others understand this type of grief as well as offer some kind advice on how we can all support those who face this traumatic situation.

How did you deal with being told your son at age 4 had a cancerous brain tumour?

When the Neurosurgeon gave us the news that Marcus had a brain tumour it was completely devastating …I remember looking at her thinking that she couldn’t be speaking about our little Marcus, that she has got it totally wrong…Thinking this only happens in the movies and in the morning i’ll wake up and it would all be a really bad dream..but unfortunately it wasn’t, as a parent you just go into survival mode and try to keep it all together for him and the family.

What kind of support did you receive during his illness?

We had a lot of support from family and friends and they were amazing.. It’s really does surprise you though who actually gives the most support to be honest ..You lose some friends, as they just don’t know how to deal with the whole “cancer” thing and then on the brighter note you gain some wonderful ones too ..Throughout the cancer journey we met some of the most beautiful families and found that as we could relate and you build a really strong bond. The RCH were wonderful also, the support we received from the nurses and our oncologist was truly amazing and as a cancer family we are all assigned a psychologist.

How did Marcus respond to his initial diagnosis and further relapse at 7?

Marcus was amazing throughout his whole cancer journey ..Initially he was quite young and really didn’t understand but he never really complained …He continued to go to Kinda/school as he loved being there with his friends. When Marcus relapsed at the age of 7, he was really upset by the news but as a family we always told him the truth about his diagnosis with what was going to happen and reassured him that we would get through it again and kick cancers butt for the second time..We tried to keep his life as normal as possible which made the hospital visits a little easier on him.

When Marcus died what sort of support helped you and your family?

We had so much support ..My cousin and his wife came over every day and brought us food/drink, they pretty much looked after us that whole week before the funeral as we were barely able to wake up in the morning let alone cope with day to day normality.. Our close friends were amazing also taking my daughter Mia to school and would always bring coffee …Sometimes its the simple things that really make a difference. And of course, our family were there whenever we needed them … The RCH has a great Social Work department and have a Family Bereavement support group once a month were all families that have lost a child at the hospital get together and speak about different topics and are able to share their thoughts and feelings. I also have been seeing a psychologist since Marcus passed which has been extremely helpful.

What have you learnt from your grief?

Living with grief is completely different everyday ..some days it hits me like a tonne of bricks, you feel like you can not breathe, with a dark cloud hovering over you and you wonder how you can possibly go on without your precious child……then you get days were you feel somewhat normal again ..I think that its really important to take your time and not listen to others if they tell you it's time to move on, grief has no time limit, it takes as long as it takes full stop … No matter how much life goes on or how much time passes, the truth is that you will grieve for the rest of you life, the only thing that changes is that you learn to live with it ..After a while you will smile again without feeling guilty, it takes time but it will happened and its ok.

What advice would you have for others who have a terminally ill child?

Hearing those horrid words that we have no more treatment options for your child, that you should take him home and enjoy the time you have left with him, still haunts me to this day …To have that feeling of not being able to save your child is the most tormenting feeling imaginable… we tried everything humanly and medically possible to help Marcus but in the end nothing worked and it was ultimately out of our hands.

My husband and I, with the guidance of Marcus’ Oncologist had decided not to tell him that he was going to die, partly due to his young age and more importantly because we wanted Marcus to enjoy the final days he had left with us without being scared….

Spend every living moment with your child, take loads of photos and videos.

Try not to blame yourself or question why "my child" because that will drive you completely crazy……and If you are struggling to deal with this, please seek help as it’s OK not to be OK ..

Losing Marcus has shown me how very precious and short life can be .. so Please don’t wait to do things “tomorrow" because “tomorrow" is not always guaranteed …

What advice would you have for those who are supporting a family with the loss of a child?

Just simply be there for the family not only when their child passes away but especially after all the funeral arrangements are over,It becomes so quiet when all the hype of the constant visitors disappear and you're left with an empty house …Continue to visit, if you not able to, a quick phone call for a chat ..It is very difficult to know what to say to some one who has lost a child but to be honest just try to be as normal as possible with them…because normality is all that we as bereaved parents could ask for from our loved ones,no need to ask if we are doing ok because we all know the answer that that question ….just normal conversation ….I know hearing what everyone was up to was what kept me going because, if only temporarily, it took my mind off my sadness...

How do you keep Marcus alive and how would you like him to be remembered?

We talk about Marcus every day ..Laugh about funny things he said or did …What makes us extremely happy is that all our family and friends always mention Marcus name as it does not make us sad. Hearing his name is like music to our ears and brings so much joy to know that he is remembered by all that knew and loved him … I constantly post photos on FB especially on his birthday and anniversaries. This gives me so much comfort and i love reading all the beautiful words and comments about our angel.

In Honour of our angel I have now joined forces with The Children’s Cancer Foundation and started a fundraising page raising much needed funds for Paediatric Brain Cancer research and clinical trials.. Its called The Marcus Rosin fund.

Thanks you so much to Marisa for her openness and honesty, this is a difficult and uncomfortable topic for many but if you ever had to experience this unimaginable grief you would certainly not be alone.

Please if anyone is interested in supporting childhood brain cancer please donate below. In memory of beautiful Marcus Rosin.

https://childrenscancerfoundation.secure.force.com/CCFDonateTarget/MarcusRosin

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