18 year old daughter, diagnosed Sept 2023 when she was 16

  • 1 reply
  • 9 subscribers
  • 26 views

HI All, new-ish to this forum as posted here just under a year ago I think. My daughter, now 18, completed her 2 and half year ALL treatment programme on 15.12.25. It was truly a hellish journey. During induction chemo, i.e. first 5 weeks, she had 4 'grand mal' seizures in the middle of the night, which put her in a 3-day coma. When she woke up, she couldn't feel anything from the waist down, couldn't even sit up unaided, and spent 15 months in a wheelchair, had to learn to walk all over again, transfers, standing up, zimmer frame, crutches, and after a huge uphill battle is mobile again and at college. She also had a rare fungal infection during the treatment, which was also life threatening, so her journey has been hugely complicated. Now she has completed treatment and continues to work on regaining full mobility, her waist length blond hair that she lost is now shoulder length, and we are trying hard to navigate a new normal and process what happened the last 2 and a half years. As a parent I am traumatised but there doesn't seem to be an outlet for me to get any counselling. I wonder how I can now move forward without fretting constantly about relapse, given that her treatment has finished and the bone marrow is now on its own, so to speak. Any advice anyone please?

  • Hi   it’s been a long challenging journey for you all…… navigating the post treatment world and treatment left overs can be very hard but let’s look for your daughter to keep pushing through.

    You are correct, there is a lack of support available for everyone involved.

    I am sure that you have already looked at these but I will put them up any way.

    Local Macmillan Support in your area.

    The Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides practical information, emotional support and may have information with regards to external support.

    Our Ask an Expert section but do allow 3 working days for a reply.

    Maggie's Centre in your area.

    Leukaemia Care UK who produce very good information and run various support platforms and they also have a Support Line on 08088 010 444.

    ((Hugs)) 

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge