Trying my best to help my daughter through leukaemia.

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

I don’t know if this forum is active and its my first time posting, so will eagerly anticipate any replies.

I realise your posting is from a couple of years ago. How is your son?

My daughter Lily turned 17 on 10th May, and is now an outpatient at a local childrens hospital, but has to return every single day, 7 days a week, for an antifungal infusion, and will do for the next 6 months.

She only became an outpatient 8 weeks ago. She was an inpatient for 10 months.

She was diagnosed with ALL (Acute Lymphoblastic Leukemia) on 22nd Sept last year, and my world collapsed. I honestly felt like I would die of a broken heart.

And I still feel this way.

She had 5 weeks of aggressive chemotherapy last Sept/Oct, and I was staying over in her hospital room one night when she had 4 ‘grand mal’ seizures, each lasting 2 and a half minutes, was transferred to intensive care, in a coma for 3 days, and when she woke up she said she was paralysed from the waist down.

Her nerve endings are coming back and she has having to learn to walk all over again, on a zimmer frame and crutches.

She had waist length blond hair, and is heartbroken as she is now bald (she had planned to study a hair and beauty course last September).

She has completed 5 weeks of chemotherapy, 9 weeks of immunotherapy, and another 5 weeks of chemotherapy, and is now on ‘maintenance’, which is lower level chemo.

She will be receiving treatment until October 2025. We are all broken as a family. I don’t think I will ever mentally recover from this.

I came back to work in January, and work 3 days a week, mostly from her hospital room using the hospital wifi, and caring for her in between, as she can’t do anything for herself.

Its heartbreaking. And my 13 year old boy has found it very difficult, as I’m mostly at the hospital and hardly at home.

She is now living back at home again to work on recovery, rehabilitation, mobility and nutrition, although as I mentioned, we have to return every day for about 5 hours for the i/v antifungal infusion.

Although we had hoped she would be in a position to start college this September, having deferred her place from Sept 2023, the reality is that she will need a further year of rehab before she is able to progress onto college.

So sorry to hear this and you have to go through such a difficult time as a parent.I wish if God listens to us and protects innocent people.Stay positive as negative thinking will not get you anywhere.

I lost my young son as couple of year ago and unfortunately we lost him when he was in remission bug the cancer was very aggressive and came back after stem cell transplant.

There is a very good treatments for leukemia and I am sure your daughter will go through.

Text me whenever you want 

Xx

How utterly devastating for you, I can't imagine the pain of losing your child. My thoughts are very  much with you. Yes, my daughter went into remission after 29 days, and was told that the level of remission she had attained only happens in 6% of people. The bad cells were only in the bone marrow, nowhere else, so I'm desperately hoping a full recovery is possible. Do you think it is?