Hi to everybody and I know if you are reading this you are also going through your own very difficult journey and I wish you all well.
My daughter was diagnosed with ALL ( acute lymphoblastic leukaemia ) on Friday 13th May.
6 days on she has already undergone steroid treatment and begun chemo yesterday May 18th. Within 2 weeks she will lose her waist length hair and she is a young women who has barely started her adult life and the treatment she has to have will likely mean she will be infertile. We did not have time to go down the egg retrieval route due to the need to get treatment started as fast as possible to give her the best chance.
I have been blessed with four daughters and my other three are full of questions and are all naturally devastated for their sister and all three immediately offered to be a stem cell donor if they are a match. I have one daughter who begins her A-level exams next week and I am worried about her as she has just bottled up all of her emotions so as not to worry myself and her dad but I know she is really hurting and really scared. I am trying to help all of my daughters as well as my husband and also extended family come to terms with what is happening and also trying to wrap my head around it and work out how to be the best possible support for my daughter and family.
I don't have the words to make this all okay and as a mother you want to take all of your childs pain away and reassure them it will all be okay and I don't know how best to help her deal with what is to come.
She is having her PICC line put in this afternoon as well as having a lumbar puncture to see if there are any cells in her spinal fluid and to have chemo injected directly into her spinal fluid to try to stop it spreading to her brain, we hope and pray that the results of the initial lumbar puncture will tell us so far it has not spread but we obviously have to prepare for the worst case scenario.
My daughter will be in hospital as an inpatient for the next six weeks and then will need another bone marrow extraction to tell us whether the cancer is in remission. She will have so many challenges to face in the coming six weeks and I know the treatment she is having is going to make her incredibly ill and the chemo will likely give her severe side effects and I feel numb right now which is maybe my brains way of helping me cope with the situation.
I am sorry for being so down in the dumps right now, I am having a bad afternoon and just needed to vent. I really do wish you all well and I am sending love and positive vibes to everybody.
sending you my love, stay strong for her, she is going through hell at this age. xx
Sorry to hear about your daughter and the impact it is having on your whole family - often we describe a cancer diagnosis as a form of tsunami washing everything away in it's path.
I don't know if you have heard of the charity look good feel better as I have heard good reports of the support they can give to people going through treatment to help feel slightly more normal.
For the one doing a-levels, I am sure you have talked to the teachers already as they may well be able to make some adjustments that may help support her - although it seems like we are very alone schools are very used to this as cancer is of course more common than many people think - not a typical conversation in the coffee shop though!
Do post on here whenever - we all need to vent from time to time and many find it surprising how typing our story can help.
Thanks so much for the link.
I will definitely look into the charity and I briefly had a read on their help for young adults and it says they work with the Teenage cancer trust and my daughter is on a Teenage cancer trust unit, so I can ask her support worker if they have anything on the unit that can help her. They use to have lots of things in place but due to Covid they haven't yet restarted all of the schemes but I will ask them as I think losing hair for young adults is a big mental hurdle to overcome.
My daughter has really long hair so we are having it cut into a short bob on Monday so she doesn't have the sight of so much coming out at once, when it starts to thin and fall out, we are doing it in stages to get her use to the idea and I have found some really pretty head scarves and I am learning how to apply eyebrows with make-up so I can help her feel as normal as she can.
One of my other daughters is taking her gel nail kit in next week and is giving her sister a pedicure and manicure and painting her nails for her and putting some stars on them, it is a small thing but feeling as normal as possible will help her get through this.
We did speak to my daughter's school and they have applied for mitigating circumstances for her. We have to fill in forms and provide proof and they get sent to the exam boards and if her grades fall short of her expected grades by a large amount then they can use discretion to award up to 2% - 5% based upon the mitigating circumstances which will help if she struggles on the day.
Many thanks for the hug and kind words. I am sending a hug back to you and you are right it does help to write it down it helps me organise my thoughts a bit and venting is very cathartic.
x x x