Trying my best to help my daughter through leukaemia.

Helllo to everybody.

I have finally found my way to the carers forum and I know that everybody who is here will also be on their very difficult journey caring for a loved one with cancer and I wish you all the very best with your own journey.

My daughter was diagnosed on May 13th with acute lymphoblastic leukaemia. She is on a teenage cancer trust unit and will be there for a minimum of 6 weeks but it could be 3 months depending on how her induction block of chemo goes and her bone marrow results after the induction block to see if she is responding to the chemotherapy and is in a remission or not.

I am posting on here in the hope that it can help somebody else in the future who find themselves in a similar position. The type of leukaemia she has is rare only 790 cases are diagnosed each year in the UK which means not many people know much about this type of blood cancer.

I had never heard of it and it has taken me the past week to come to terms with my daughter having cancer, even saying it out loud it still doesn't seem real even though she is now on her fourth day of chemotherapy and is already having side effects from the intensive treatment I look at her and still cannot believe it is my daughter in the hospital bed.

Acute lymphoblastic leukaemia is very aggressive like all blood cancers so her treatment has to be equally aggressive. She is being treated with the paediatric protocol as it offers her the best chance as it is the most intensive and her consultant believes she is young enough and strong enough to cope with it.

I have deliberately not researched survival rates for this but it hasn't stopped every family member and friend turning to Google even though I told them not to and they are scaring themselves. Her consultant says she has a good chance given her age and he believes she will respond well to treatment as long as it hasn't spread to her brain yet and as long as other factors go in her favour.

I find I am dreading every test result, beginning to dread her haemoglobin and platelet count each day and she is currently have bloods and platelets transfused every second day. She fainted in the bathroom the other day and my mind went to the cancer is getting worse even though I know chemo will also have the same effect and will be lowering her red blood cells so it doesn't necessarily mean the cancer is getting more aggressive.

My daughter is feeling very drained, she doesn't have much of an appetite and is forcing herself to eat despite how sore her mouth has become and the mouthwash they have given her isn't helping much yet.

I keep thinking we are only on day 4 and she already feels as bad as this, what on earth will she feel like in a weeks time when all of her hair has fallen out, I don't know how best to comfort her and I am trying not to fuss over her too much as she is a very independent young woman and has already left home so the thought of her having to give up her rented flat and move back home must feel like regression to her, even if it is only going to be for the duration of her chemo for the next year. She feels cross at times which the consultant warned us would happen due to the steroids and the last thing I want to happen is for her to be upset during treatment but I realised yesterday that just because she has cancer, other emotions don't suddenly switch off, she will get angry, sad and all other manner of emotions and all I can do is try to help her through them and be there for her to shout at if she needs to vent.

I know this is going to be a very hard journey for my daughter, myself and her dad and her three sisters and our extended family and I know there are going to be many ups and downs along the way and I just have to have faith that eventually she will get through this and be able to have her life back on track but I also have this fear inside of me that I might lose her and I think it is making me try to hold onto her even harder which I know I need to work on so she doesn't feel suffocated.

Has anybody else had the experience of caring for their young adult child? Or has anybody else had the experience of caring for somebody with blood cancer? I would be very interested in  hearing your stories.

Much love to everybody and sending virtual hugs to all the carers out there. x x x x

  • I went through the same situation with my son and even worse, he was in young adults unit at UCLH, stay strong for her and provide her every comfort that you can.Dont let her gogel and tell the doctors to stay positive in front of her and don't mention anything in front of her.

    I am extremely sorry and do understand what you are going through.I am here for you if you want to have a chat

    Love Ghaz 

  • Hi Ghaz

    Thanks for you message and kind words. I know you lost your son and I am really sorry for your devastating loss. We were originally at Bart's as my daughter moved to London 8 weeks ago to begin her new job, it was a choice between UCHL or her being moved to Yorkshire where we live so we could be on hand to look after her and visit her each day and thankfully it worked out that a bed came up on the teenage cancer trust unit at our closest hospital which means we can visit her and also her sisters can.

    This has all happened so fast, she was fit and well when we last saw her and really enjoying her new job and enjoying living in London and she didn't feel unwell just a bit tired. Looking back she complained of shoulder pain at the end of March and a sore hip but she had just joined a gym and was swimming lots so the Doctor diagnosed tendonitis.

    My daughter works for the NHS and is in theater most days and 12 hour shifts so it was natural that she felt tired but something was niggling away at me at the back of my mind and I urged her to make sure she got a blood test done and she promised she would and she had the blood test on the Wednesday and was called in to see the haemotology consultant at the hospital she works at and they then called us and we travelled straight down to meet her outside Barts.

    She then had a bone marrow extraction on the Friday morning and was diagnosed officially on the Friday afternoon. I knew as soon as I saw the consultants face and it was like a physical punch to my gut and it still feels like that even now. I am definitely going to talk to a counsellor to try to come to terms with what is happening and how fast it is happening.

    They said she had to begin chemo at once, and gave her a three day course of intensive steroids to help her cope with what was to come and I think it is the speed of everything that I am finding hard to deal with. I haven't had time to come to terms with anything because the next day something else happens such as lumbar puncture, chemo into the spine, picc line put in, bloods transfused e.t.c and the problem is because my daughter is medically trained nothing can be hidden from her as she knows what everything means so even if they talk in medical terms she knows the situation and you are right it is not helping her to know everything as she also knows just how severe this leukaemia can be and how for some patients no matter what they do they cannot be saved.

    Sorry for the long reply I find it is helping me to vent on this forum as I cannot say this to my family, they need me to be upbeat and positive and I am really trying to be for my daughter and her three sisters who need their mum to be strong.

    If you want to share your son's story then please don't be afraid you will upset me or scare me, I know what I am going through is not unique and I also know that lots of parents have suffered the devastating loss of their precious child and I really am desperately sorry for you and your family for the loss of your son.

    Love and hugs being sent to you Ghaz. x x x

  • To be honest,  exactly the same story I am usable to share at the moment as if is so fresh.Healthy, fit 24 years old,  extraordinary intellectual and got first class degree, he was even studying and attending virtual classes,  he had his stem cells transplant and we were told he was in remission but all in sudden we are not sure what exactly happened.

    Anyway,  stay positive,  every case is different and I know a lot of people were told that threor cancer  is not cureable but the came out of it successfully.How old is your daughter, stay with her in the hospital,  I never left my son alone in the hospital even for a single day.

    Do you have a faith? It helps a lot even though I lost my faith.

    Chemo is itself very harsh treatment,  you are going to see ups and down but stay positive.

    Thank you for sharing your story,  I am here for you.

    Sending you strength and love

    Xxx Ghaz

  • Your son sounds a wonderful and hard working young man and he is a loss to the world. My daughter attained a First as well and worked so hard during school, A-levels and University. She graduated in 2019 and then spent the next two years in the ICU intubating patients during Covid. She is such a positive light in the world and does so much to help other people. I would take it from her in a heartbeat if I could.

    My daughter is almost the same age as your son was, As she is under 25 we were offered the place on the Teenage Cancer trust unit as they have one for 19-24 year olds in Yorkshire much the same as UCHL does.

    My daughter is philadelphia negative which we have been told means she won't absolutely have to have a stem cell transplant, it is 50/50 and there is a chance that a year of chemo will be enough to cure her but we won't know until she has the first bone marrow extraction after the induction block of chemo as to how successful it has been.

    If there is still lots of MRD then she will need a transplant. My other three daughters have offered to be the donor if they are a match so they will go through blood matching soon just in case she needs one.

    How heartbreaking for you to be told your son had achieved remission only to then lose him. It really is an emotional rollercoaster and it must be so hard to work through your feelings not least of all the anger and deep sadness that you must be feeling. I am struggling to deal with how sad and angry I am feeling yet I have nobody to direct the anger at, as there is nobody to blame for this, it is just a genetic mutation a random event.

    I do believe in a higher power but I feel despair atm and I am not surprised you feel as if you have lost your faith.

    Our children are our world and they are so precious to us that losing one of them is just beyond comprehension. I honestly don't know how I will go on, if we lose our daughter. I know I will have to for the sake of my other children but I would find it impossibly hard to even get out of bed due to grief.

    I can only reiterate just how sorry I am that you have gone through the experience of losing your wonderful son, I really do feel for you and no parent should ever have to lose their child and I really hope that you have a good support network around you to help you through this horrible time.

    I am here if you ever need to talk, I don't know what comfort I can offer but I will do my best.

    Love to you and your family. x x 

  • Thank you so much,  its life and as you mentioned its Gene's mutation and there is nothing we can do, just try to give them good time of their life.

    Please don't ever think of loosing your daughter,  she will be absolutely fine as I have seen many old people living normal life with the same type of cancer that your daughter have.Always stay positive and don't let the negative people to be around you.

    People with Lukemia live long life and I will pray for your princess to be successful in her treatment.Remember the treatment is harsh, you have to strong for your daughter.Keep in touch with her.Itz important for her yo stay in touch with her friends as she can communicate better with them rather than you or other family members.Take some home food for her or ask her if she wants to eat.someghing.

    Don't hesitate to text me whenever you feel down.I am always here for you.

    Love Ghaz x

  • I am currently caring for my son who also has Acute lymphoblastic Leukaemia, he was diagnosed on 24th Nov 2021 on Monday he starts the fourth regime of the protocol. We are hopeful he can then go onto maintenance. I totally understand how it feels to need to stay strong whilst feeling helpless. xxx

  • I am so sorry your son is also going through this horrible disease. It is hard to stay strong but we have no choice we just have to get through it as I am sure you are finding. You would have been going through the induction block over Christmas which must have been hard for you and your son to deal with. It is my daughter's birthday next week and we will do what we can to give her a special day but it depends on how she is feeling on the day.

    How did your son cope with his induction block of chemo? I am assuming he went into remission at the end of the induction block? I think it is my biggest fear as my daughter just looks so unwell right now and is needing bloods and platelets transfused every second day to keep her numbers above 80 and my biggest fear is that she is not responding to the chemo and it is not killing the cancer.

    Once I know it is working and she is in remission then I think I will calm down a little bit and see hope there at the end of the tunnel. We should get the results back on Monday of whether it has crossed over to her brain and hopefully it hasn't and she is having chemo into her spine once a week right now which should stop it crossing.

    Love and hugs being sent to you and your son and I will keep everything crossed his fourth regime goes really well for him. x x