Primary School Aged Children

[scottinthegarde]

Hi Veronica. Thanks heaps for your advice. At the moment all the info we are getting is wishy washy. Or really when I think about it, I am flat out explaining to other people what Myeloma is and what to expect from our journey....as if I know. However I feel like I am learning fast and input like yours is really helpful. I do feel like I am able to be honest with the kids and we are talking about this on a daily basis. I feel like its going to change them and make them have to grow up fast but the same can be said for me. Anyway, everything is disconcerntingly 'normal' at the moment as my wife is home and mostly functional. I just need to remember that we will be hitting a pretty hard wall in 10 weeks (stem cell transplant) and work out how to prepare the children for a long stint where their mum will be out of action. I'm glad you have had a spell of peace and sincerely hope you get your desired results as well as that job. Good luck. Thinking of you. Thanks again. Scott

[Von]

Hi Scott, Unfortunately my husband's PET scan showed a return of aggressive liver tumours. This was very bad news. Still, he is working and looks 'normal' apart from his ileostomy. He hasn't lost his hair with all the chemo and he bounces back from all the drugs pretty well. It helps in a strange way that he is younger than most and he's otherwise healthy. A perverse positive! I had all sorts of visions about how bad things would be before Tony started his chemo. The reality has been different to my expectations. They've really been very good about dealing with the side effects of the Chemo pro-actively. Different people have different reactions, and different journeys, so read with interest - but, know that what happens with your wife on her treatment will be very individual. This is very much a roller coaster ride. I was reading a 'survivorship' speech on the Peter Mac (I live in Victoria) website the other day, and the woman who wrote it described the journey as a Carnival. Sometimes you are on the roller coaster, sometimes you are in the house of horrors and sometimes you are kicking back enjoying fairy floss. It is not a linear journey. The kids have been pretty good really. They now want to talk to people who share and understand their experience - the younger one has just really started to understand the concept of death. There is very little formal peer support available for primary aged kids... none actually. The Pallative care people have offered counselling - and don't be afraid to tap into Palliative care early (they are not just there for the 'end' of life stuff). Still no job... bummer! We are away for Easter to have a break. All the best. Veronica

[scottinthegarde]

Melanie. Thanks for your reply. I cant imagine how hard it is what you are going through and have been through. Sounds so hard with kids that young. My kids are running around and my wife is in the bath...a normal night. But then I remember that she is in for 12 weeks chemo and then Stem Cell Transplant which means 3 weeks in hospital and 3-6 months at home recovering (not that it is a permanent cure). I cant fathom what this means logistically. But two of us struggle to contain the energy of a 4.5yo boy. Can I do it alone and look after my daughters feelings, my wifes lack of immunity, school, meals, work, blah blah...you know how it is. I guess I am trying to prepare for what I know is going to be a big challenge for me. Its nice to talk to someone else who has been there. I hope your husband is doing alright. Just remember that despite a permanent headache the sound of your children being children is music and gives him a great reason to fight hard. Scott

[Melanie]

Thanks Scott, he is doing as well as can be! We have a scan in the next 2 weeks - just have to try not to hold our breath until we get the results :) You won't fathom what it means logistically but you can do it- it will smash you in the face- hard & fast. The key- be prepared! Now is the time to make extra meals at dinner time & freeze them. Start doing little things now like cooking biscuits that you can freeze, muffins etc all easy things that work well for school lunches that you can pull out the night before or even that morning for their lunches. Also have a range of food for your wife, jelly, custard, crackers are a staple in our house- so that if dinner makes her feel nauseated she will have options. The key with chemo is to keep them healthy, so if she feels hungry at 1am not 8pm tell her to eat at 1am. If you get malnourished - chemo stops. Get your support team in place, arrange with family to help out, make it routine. If you have no family help, try to arrange a baby sitter that you can create with the kids a relationship. You will need a break, and they will need attention from someone who is completely focused on them. Make sure your school/ kids teachers know the situation, know chemo weeks etc- they will help too if the kids are emotional or just need to chat. Don't do more than you have to do, don't volunteer for anything. Some weeks will look awesome, then the next you will feel like your drowning!!! Like my washing this week- arghhhhhh...... it is an avalanche and I seriously can't seem to get ahead with it! Kids are resilient, they handle it better than me 🙂 Last of all- come in here to vent 🙂 Blog away :) My 1 year old doesn't want to sleep tonight- I would really like her to give in- stubborn little bugger! Hug your wife, say I love you all the time, get family photos done, get your financial affairs into place (wills, enduring power of attorney etc) and like the previous poster said- sit down, buckle up, and try to enjoy this roller coaster. Mel