Dealing with cancer and being a parent to a young child

[WishingStar]

Hi, I am a mother of a two year old daughter who has a brain (and a benign maxillary) tumour. I am finding the hardest part of my journey is thinking about the future for my daughter and not coping overly well with the likely possibility that I wont be around. I have started scrapbooking and buying her presents for important birthdays and life events etc- but I also run a busy business (which I am desperately trying to sell) and facing more surgery/radium/chemo and finding the time to get things done very limiting - not to mention feeling so tired all the time. Does anyone have any ideas on how to cope with a little one and how to 'fit in a lifetime' of memories for my daughter in a short space of time?

[Kate_Unicorn]

Hi nickij, Such a difficult postion to be in, and a huge thing to try and get your head around - not only for you, but your little girl as well. I can see that although 31 people have read your question, it seems that they might be scratching their heads as to how to deal with this as well. It would be great to hear other's thoughts.... Kate (Coordinator Telephone & Internet Support Groups, Cancer Council of Victoria)

[AmandaC]

Nickij, Wanted to let you know I read this post earlier today and have been thinking all day about how to reply to you. I decided I would tell you my story and how we delt with it. When my son was 2 months old I was diagnosed with papillary thyroid cancer, I obsessed over making everything perfect for my son. I wanted every day to be fantastic and hoped to be around long enough for him to remember me, as I got closer to treatement which I waited 7 months for (long story) I was so tired I could not get out of bed. I had to get help to look after him, but the time I did spend with him was quality time and I think that makes all the difference. When my son was 2 my husband was diagnosed with stage 2C yolk sac tumour, so again we were living the nightmare of operations and treatment. Of course my son being much older was more alert to what was happening, my husband found himself desperately trying to make each day perfect for our son but was soooo tired and sick. I used simple techniques like getting my son involved with making daddy some dinner to take to hospital, the days daddy was home he got to stay up a little later to sit and cuddle daddy and read books and the days daddy was to sick or tired for visitng we would draw pictures of us all and make daddy cards. My son is now almost 4 and still like to do these simple things to connect with us every day. I guess what I am trying to say is us adults have a different perspective on perfect and long lasting memories, our children fondly remember the simplest of things we do. Anything we parents do is everlasting in our children's minds and hearts. I also think you need to enlist the help of others to help you achieve your milestones or goals, safety in numbers and all that. I actually found it really handy to obsess over doing stuff with my son it gave me the drive to keep fighting the good fight and striving for nothing less than a miricle. Its good to have a strong focus. My husband and I are fortunate that we are both in remission, but we live each day fully in the moment we realise in the blink of an eye it could all change. Love and good wishes XX Amanda

[WishingStar]

Thanks for your replies, I think I do overthink it a little bit too much, and I am trying a bit too hard with the 'quality time thing'. I am finding behavioural problems are starting to show there head, 6 months ago when I was first diagnosed and had two major surgeries, my daughter (18 months at the time) was mummy's helper, but now she gets angry and throws tantrums if I need a day in bed - a lot of her behaviour is normal for just being 2, but I am worried that she becoming somewhat spoilt - especillay by extended family members. Thanks again for your replies, I am sorry that I posted such a heavy question, XOXOX nickij

[benlisecca]

Hi Nickij, it is a tough one isn't it! I was first diagnosed in Nov 08 with a very poor prognosis at the time and still breastfeeding my 18month old. I can empathise completely...such a horrible horrible feeling about how to cram a life time of memories into such a little girls life..... it's painful to even think of it now after this time. Will she remember me, what will she remember, do I write letters, make a video, how can I teach her all the things that I wanted to teach her in the time I have......OMG! All the while fitting in treatment, feeling soooo tired but still wanting to be a great mum like both you and Amanda. I could still play with cars on the floor with one hand while lying almost comatose on the lounge. Cushions on the floor to lie on so I could still be "involved" in play. Picnics for the kids in bed with me...not much fun for me but the kids didn't notice. A chair next to the sandpit. I made sure I took my anti nausea meds regularly which helped me keep up with things a bit...once the nausea kicked in it just wiped out me wanting to do anything. I found that the kids didn't necessarily want me to actually play with them they often just wanted me to be in the near vicinity. like Amanda has said I think it's the simple things that the kids get the greatest pleasure in and it's more the feeling of contentment that they cling to rather than any actual things that we can do for them. I made an effort to get baby books up to date and wrote detailed birth stories in case I wasn't there to pass the info on..... ok... I am still working on the baby books 🙂 I started writing letters for each birthday with age appropriate info on boys, how to treat friends, my hopes and dreams, what to do on a date (and more importantly ...what not to do), to wax her legs and not shave,how to deal with periods, so many silly and trivial but oh so important stuff. Of course it took a lot of effort and so many tears... I wish you all the best and I hope you and your daughter get many many many many great years together. Thinking of you and sending you good vibes. Sharon

[WishingStar]

Thanks Benlisecca, Thanks for the great play ideas! I found blowing bubbles was good - until she wants to do it herself. I am also trying to write the baby books, scrapbooks, photos albums etc - I just got 900 photos printed (the man at the camera shop thought I was joking)- digital cameras are great, but I tend not to get time to print out hard copies and then I woke up in a cold sweat that the computer would crash or the usb back up would be thrown out when I was gone. I have also started (well at least though about) writing letters/journal about the big teenage stuff - my husband grew up in a family of four boys and will be completely overwhelemed with all that stuff), I do find it hard (emotionally draining) to put pen to paper, but want to start before my next surgery in November. Thankyou for the great ideas!!! It is something I have thought a lot about and have found internet resources etc very limited etc on ideas for this kind of thing - my councillor feels I should just focus on being positive and put my energy into recovery and remission/ which I am trying to do - but it is the thinking of my little girl getting her first period, or being bullied at school as a 12 year old without a mum that keeps me up at night. Thanks again for the great ideas, Best of luck to you and your family, nickyj

[benlisecca]

Hi Nickij, I did the whole photo thing too and printed out about 3000.... my photo shop nearly had a heart attack. It was lovely though and the kids even now enjoy looking at the photos that were previously just stuck on the computer. Of course the tears flowed but I am glad I did it. Your counsellor sounds like my husband....I feel I am optimistic but I am also realistic. I am positive that I will beat this cancer but I am enough of a realist to have contingency plans..... plans for nannies, carers, schools, etc etc. It is good to focus on recovery and getting well but there are so many other things that are important. I don't think it makes us less positive??? I'm a mum, my kids are my world. I hope the tanties are settling a bit, 2 is such a wonderful age. My 2 yo is really starting to assert herself and wanting things her way.... mmmmmm...... I am starting to see so much character, it's wonderful. Figure with that much character and will power no one is going to push her around and she will be a strong woman. wishing you all the best and tantrum free days :-) Sharon xxxxx

[WishingStar]

Thanks Sharon, The tantrums are continuing - but she is getting tonisllitis a lot (they are coming out next month) so it may be making things a tad worse at the moment. But I never thought of the tantrums being a sign of her being a strong woman (I will try to remember that during the next episode!). I am glad you agree that I dont think that we are being less positive by making contingency plans - just realistic. My husband is also in denial about the whole thing and wont talk about the possibilty that I wont make it, but I feel I need to be prepared - just in case (I especially want to do things before my next surgery - being the whole brian thing, I may not remember the whats behind the photos myself, so I just feel the need to be prepared), Wishing the best to you and your family, Nicole

[MeAgain]

Just a thought... Hi, just finshed reading “The Last Lecture” by Randy Pausch, about a father preparing his life lessons to hand down to his kids after he recieves a cancer diagnosis which may help you or maybe you could download the actual lecture itself (havn't actually watched it yet just read the book), it may give you some ideas. I have an 21 month old and another on the way and am using some of his suggestions "just in case" and i hope to enjoy watching "my last lecture" with my grandchildren! Hope it helps

[WishingStar]

Hi MeAgain, Thanks for the suggestion - I remember watching the lecture on you tube when it first came out - Randy was such an inspirational guy - I didnt realise he had a book published - will definately look it up and probably re-watch the you tube video - Perhaps we can stay positive and both aim to watch the last lecture with our grandchildren. Thanks for the advice, Nicole