My daughter has recently been diagnosed with ALL one week before her 21st birhtday. She was living on the Gold Coast when we got the news. I have just relocated her back to Sydney as she requires a bone marrow transplant and all her family live here. Carly has just gone back into hospital for her second round of chemo and is not coping very well at all. As her mother my heart is braking as I feel helpless to do anything for her. She is still coming to terms with her cancer and I cannot seem to get her to talk to anybody about what is going on in her head. THis is the only sight I have been able to find where I might be able to get some insight into what she is going through and how I might be able to help her with dealing with her hospital visits and her overall day to day stuff. I work full time so it is hard to be with her all the time while in hosiptal. Anyway if someone has a story I would love to here from them.

Cheers

Jojo

Hi Jojo,

I was diagnosed with ALL 2 years ago at age 18, and there is no doubt that it is incredibly tough on both the patient and the parents. For the first few months I was in heavy treatment I more or less totally withdrew from talking to others about how I felt as well. I know for me this was partly due to the sheer fatigue of the treatment; when you feel that way your mind doesn't focus on much else, or at least not for very long. It also took quite a long time for the whole thing to really sink in...I knew I had cancer and felt like crap, but for me it didn't really register in the way I expected it to because I was the same person I was before, just feeling terrible.

As far as what is going on inside her head, I can only relate what I experienced, but I know that for me I didn't feel much like talking to anyone but my very closest family members, because I simply didn't have the energy to have to put on a front (sit up, smile, reassure, etc.). Even though no one expects that, you still do it anyway. But I will also tell you that any time you spend with her in the hospital, if she's anything like me, will be extremely comforting...I used to wait all morning until my parents or brother would come to visit, even if it was just to sit in silence. Just by being there you are being a great help.

Peter

Hi Peter,
I hope you are doing well with your health now. Thanks for responding to my message it does help to hear from others who are actually going through this. She is very angry at the moment and is pushing her family away. She is also having very heavy treatment at the moment and does not deal with the lumber punctures at all (totally understandable). I am trying to encourage her to talk to the counceller at the hospital about what is going on in her head, but she says she doesn't know what is going on in her head so how can anyone help her. Should I just back off and roll with the punches (and theres many of them). Carly is a very stubborne young woman with a free spirit and I feel she is making her stays in hospital much harder than they need to be by fighting it all the way. She is also waiting to here if her brothers are compatible for the bone marrow transplant and I think that is scaring her as well. Agian thanks for talking to me Peter if you have any suggestions please let me know.

Cheers

Jojo

Hi JoJo

My boyfriend is about 2 months into his treatment for ALL and is going to be getting a transplant soon.

I don't know if your hospital is the same but here the psychologists are available for all of us to talk to. I would suggest maybe speaking to them about what is going on. The last thing you want is for things to be more difficult than they have to be. My partner did not want to speak to the psychologists or counsellors at the hospital to start with either. A few weeks in things changed.

He didn't cope very well at all with the Lumbar Punctures but recently they have started using a short lasting sedative which takes away any memory of what is going on and he falls asleep during the procedure which makes it go very easy. I suggest talking with the nurses and the psychologists about this at the hospital as it is possible and it makes it easier for everyone. He is no longer anxious about them.

To make things easier for her, it might be worth trying to borrow a laptop for her and get her on the internet??

Things do get easier as it becomes more normal what she is going through.

The Leukaemia foundation is also a great support to talk to.

I hope things get easier, just try to be the best support you can for the time being. Have you tried bringing boardgames in? or maybe get her to keep a list of things she wants to do when she gets out so she can have things to look forward to?

Cheers

Hi Cera
Thanks for that. Are you guys in Sydney. If so is he already at the hospital where he will be having his transplant. Did he get a sibling donar. I hope all goes well for him.
I spoke to Carly today and she said that she did speak to the councellor, so I guess that is a start. She is having her lumber puncture today in radiology where they can pinpoint exactily where to go in so hopefully this way will help her. I will talk to the nurses about the support for her. I think it is hard for her sometimes because she had built a good relationship with the nurses on the Gold Coast and she has to start all over again at St George Hospital. It must be quite scary for her, her whole life has changed and will never be the same again.
Thanks for your thoughts maybe we can talk again.

Cheers
Jojo

Hi JoJo

sounds like you may be getting somewhere. Depending on how it goes the drug I was talking about is called medazalan.

He isnt back in for his transplant yet. He is finishing consolidation at the moment at home. So far he has managed to stay out of hospital for the past 4 or so weeks which is good.

His sister is a donor which is also great. Have they started testing your family yet?

Do you know what protocol your daughter is on?

cheers

I also initially resisted talking to counselors in the beginning. At that stage I didn't feel particularly philosophical about the whole thing, because its hard to reflect on something when you're still experiencing it intensely moment-to-moment. I also found that some of these well meaning people could be very irritating, because they were trying to sympathise with me but in reality had no idea what it was really like. Sometimes its easy to say exactly the wrong thing, and many times (I have been told) patient-supporters are bewildered as to what it was.

It might help if you try to "back off" just a little...I say that because one of the biggest ways a supporter can help is simply by being there...even the nicest words with the best intentions can't always make her feel better.

In terms of practical advice for getting through the various procedures, I guess I would tell her to try not to worry about them until absolutely necessary...which can be near impossible to do, no question...but often you'll end up spend days anticipating and building up these awful things, which themselves don't last nearly as long.

Hi guys

I just wanted to add that the mums, dads, bros, sis, boyfriends and girlfriends also need support! My mum had counselling when I was diagnosed and also got help from her friends and social groups.

JOJO and Cera - you carers need to make sure your cared for as well!

hematite

I wish I could find time to talk to someone at the moment. Carly is not dealing with her treatment at all and is making her life so miserable. I have had the biggest fight with her today and she doesn't want me to help her anymore she is pushing all the people who care away from her. God this is so hard, when she has a good day so do I, when she has a bad day so do I. How much do we endour before we brake. I so need to get counselling or something to help me help her. I feel useless at the moment and my daughter is falling apart. How do you make a 21 year old accept that she has to have a positive outlook on life when she is sick all the time. Sorry for being negative just neede to express.

Cheers

I feel for you. Right after I was diagnosed, my mother told me that this would be the hardest thing I would ever face, unless it happened to my children. Parents and supporters often feel like they have to ignore their own struggles to care for whomever is sick...but try to remember that it's hard to be a rock when you yourself are fragile.

I think it would probably do your daughter a lot of good to get a chance to talk to someone else close in age who has gone through the same thing, ideally in person (if possible). Once she realizes that this person truly "gets it", it will be much easier to take their advice and open up. I know I found this to be very helpful for myself. Similarly, you might find it helpful to talk to another supporter, who has had to deal with the same things you are. It may seem like there aren't many of these people out there, but they are, and I'd bet they would be more than willing to talk to you and your daughter.

Peter