Dear Mandy,

I've tried several times to respond to your post, and I'm at a stand-still. The reality of how this disease has touched your daughter has floored me.

To deal with a spouse (husband, wife, brother, sister,....etc.) is one thing..............a child, unbelievable.

I've read Hayley's blog. She is such a beautiful, articulate young woman.

To deal with this, your child !!!!!!!!! My heart is with you.

Love,
Mandi

Dear Mandy - You have a beautiful, amazing and courageous daughter! My heart goes out to you and just aches at what you are having to go thru. When my son was diagnosed with SCC I felt my heart breaking but somehow we made it through the dark days and a large part of the strength I felt came from right here on this site with the loving wisdom and compassion I found. Stay close to OCF and do email me if you need to talk. (you, too, Darcy) - I'm sure we can help each other.

Paul's Mom

Mandy:

I just posted on Hayley's blog about her hair. As a young girl, she must be so upset. I have an 18 year old son. As a mother, you must be devastated. You have found a wonderful site where you can ask questions from people who have gone thru this terrible disease and beat it.

I went thru oral cancer with cisplatin and 7 wks of radiation. I was told I would lose all my hair. I cut my long hair short to save myself the agony of losing it in long pieces. I did not lose my hair. I still have a full head of hair except a tiny bit on the back of my neck. This was lost from the radiation, not the chemo. It is completely unnoticeable.

Best of luck to you and your brave daughter. You are in my prayers.

Thank you all for your lovely comments..it means a lot.

Hayley is couragous..she is coping really well. Better than her mum is anyway. I just feel so out of control, helpless...

Anyway, for those of you lovely people that haven't read Hayley's blog..she now has a treatment plan starting next Monday (17th Dec):
1st cycle: 5 days of chemotherapy -Taxodene, Cisplation & 5FU. Then a three week break before starting cycle 2 (same as cycle 1), then 4-5 weeks later, radiotherapy will start for 7 weeks and one day every week, she will be having Cisplatin at the same time.

Hayley's onclogist has told her that no expense is being spared! and he also said that this treatment has a 90% sucees rate. Of course, I want to build my hopes up, but at the same time will take one day at a time.

I just want to add that you are all in my thoughts, and I am so glad that this place exists..I didn't think I would need it. I need it very much.

Hugs for everyone,

Mandy x

Hi all,

Just a quick update on Hayley:

She is currently having her 2nd cycle of chemo - the oncologist reduced it by 25% as she was so poorly with the side effects and spent all of christmas week - (went in on christmas day)up until new years eve - in hospital. She started this 2nd cycle yesterday - had a reaction straight away but it was sorted out and things seem to be moving a long smoother today.

She has a CT scan booked for the 17th January to see if the tumor is any different - her oncologist says things are on the up because of other signs (i.e her voice coming back)- we bumped in to him this morning and he said he may get her in earlier than the 17th because he wants to see (depending on the tumor response to chemo) if a 3rd cycle of chemo will take place. At the moment she is having 2 cycles of chemo - then 5- 6 week break and then 7 weeks of radiation plus chemo once a week.

She remains so very positive - even having gone through what she did over christmas - she says "other's have it worse and as longs as 'it's doing its thing' then it's worth going through all this treatment"

She is an inspiration. She is my strength too.

I haven't been about much - funny how things change so much when you are hit with something like this - I do get to read on the OCF from time to time - and which I shall continue to do so.

The days aren't always dark now - some days there is sunshine and laughter, so we walk each day and deal with whatever is thrown at us. Hayley has taught me that. No point in worrying about tomorrow for we have no control - she says just deal with the day we are in.

Thoughts and wishes coming your way.

Happy New Year to you and yours,

Mandy :-)

Your daughter sure is a strong young lady and it seems her mom is strong too. I wish you the best and hope this round of chemo will fix her problems for good. You are in my prayers The best to you both.

Mandy,

How nice of you to provide an update on Hayley. It sounds like you raised one amazing kid. I check out her blog periodically and while I was saddened to hear how hard the chemo was on her, I find her attitude to be very inspirational. I think of the two of you often. You two seem like an amazing team!

Hi, Mandy,

I am so sorry that Hayley had such a difficult time with her first round of chemo. My husband had a similar protocol with induction chemo (2 rounds) followed by chemo/radiation combined and he reacted to the first round but then got different meds to help with pain and nausea and did better the second round. He got through the chemo/radition fairly well (not that it was easy but we managed) until the last few weeks and then for a month afterwards but now it is almost 3 months post-treatment and he is really so much like himself again and eating, etc. I found it very difficult to get through some days but I literally told myself to take one day at a time, to put one foot before the other, to not think too much about the outcome but to focus on the process, and to grab moments of happiness whenever I could. I kept reminding myself of what a short time this was in terms of our lives and how much we had to gain if I could help him as his caregiver as he ended up depending on me so much. It takes so much strength for everyone to get through this so I am hoping that you feel the care and strength I am sending to you and Hayley.

Hugs- Sophie

Mandy:

Thanks for the update on Hayley. Its great to hear she is making progress with her voice returning. Im sorry to hear the chemo is so hard on her. You both are in my prayers.

The Tumor has shrunk!!!

I took Hayley to meet with her Oncologist and consultant this morning. She had the camera put down her throat - heard lots of pleasing noises in the room whilst this was happening. I wasn't sure what I was looking for when I watched the procedure on the screen - we were also shown a photo taken when the tumor was originally found in October 07 and compared it with todays photo..and I couldn't see anything!! I asked Hayley's oncologist if it was pleasing result..his reply " Oh yes, yes, very pleasing"

I know she still has a way to go - and she remains so positive. She is a week out of her 2nd chemo cycle and thankfully the reduction in the amount given (25%) did make a difference. She was more tired than anything else and no big time side effects like last time :-)

So, the plan is now, a 3rd cycle of chemo which she starts on the 28th of this month. Then a 5-7 week break but radiation preperations going on in that time. Like i mentioned before in another post, she will have one day a week chemo whilst having radiotherapy. Her Oncologist has said that he wants her to have a PEG line put in. She wasn't too happy about that. He hasn't sat down with her and spoke about the radiotherapy yet...he will be doing that just after she finishes chemo. Of course, i have read on here about the effects of radiation and having a PEG tube..and it makes me feel that the worst is to come? She is maintaining her weight, well, she has lost 6lbs since last October - but she still is a healthy weight. I am worrying about how much she will lose once radiotherapy starts.

I'm kind of glad knowing what I learn from on here but at the same time...hmmm..worried also.

So as much as I am happy with today's news...I am slightly anxious of what is to come. Chemo was hard to watch from a mother's point of view - I know it wasn't me having it - I also remain positive in my thoughts of Hayley beating this ..it's just the unknown again..meaning the radiotherapy.

Anyway, just wanted to keep you in the picture.

Thinking of you all,

Mandy