May 16th - A bed on the Teenage Cancer Trust Unit at our local hospital in Yorkshire has been found. Jess is being transferred from Barts to our hospital, they were so kind at Barts and provided a car for all of us, so we could travel there together. We arrived just after 6pm and settled her into her new room and then left for home, going through our front door we were met by her sisters who gave us a huge much needed hug and we spent the evening with them, talking about what is to come.
May 17th - Met Jessica's new consultant. He is really lovely and told us he has four daughters as well and a similar age to our four, Jess really likes him and we have lots of faith in him, he talked us through everything and wants to treat this really aggressively and thinks Jess is young enough and strong enough to tolerate the most aggressive treatment. He decided to start chemo the next day so height and weight checked to ensure correct dose is given.
I have arthritis and a niggling thought has been there since Jess was diagnosed about auto immune conditions and if I had potentially given a bad gene to Jess, the consultant explained it is just a random event and a cell mutation, it is not hereditary in Jessicas case and our other three are very unlikely to get it. It put my mind at rest and at least I can stop worrying about implications for our other three daughters and put their minds at rest as well.
May 18th - Chemo start date. After four days of intensive steroids and two blood and platelet transfusions, today marks the beginning of chemotherapy. My daughter's consultant has decided to go with the paediatric protocol as he feel it offers Jess the best chance. First dose is into the IV line and tomorrow she will be going down for two procedures one to put her PICC line in and the other to perform a lumbar puncture and to administer chemo directly into the spinal fluid. Her consultant has told us that without the chemo into the spine she has a 40% chance of it reaching her brain and with the chemo it is reduced to a less than 5% chance.
We have received the news that her bone marrow shows she is Philadelphia negative so she doesn't 100% have to have a stem cell transplant, the plan is to try with chemo to get her into remission and leave the option of a stem cell transplant on the table and use it if needed.
We are still waiting for the lumbar puncture results to let us know if any MRD ( micro residual disease ) has been found in the first lumbar puncture which will tell us if it is already in her brain or not.
Emotionally it has been a roller coaster and I am still in shock to some extent as is my husband. Our other three daughters have switched between needing to talk about it and tears to not wanting to discuss anything cancer related or even hear the word cancer. I am planning on taking them to our local Maggie's center next week to see if they will find it easier to talk to people who know how best to help them.
We have one daughter who has just begun her A-level exams and the school have been a help in guiding us through how to apply for mitigating circumstances.( I will explain how it works incase anybody else ever finds themselves in the same situation ) We have to fill in forms and send proof of the situation to the exam boards via my daughters school. As I understand it my daughter has been predicted 2 A's and 1 B over the course of the last two years of study and she scored 3 A's in her mock exams. They expect her to score at least the 2 A's and the 1 B. If her exam grades full short of her expected grades then the exam boards can award a 5% discretionary increase to her grade. She needs good grades to get enough UCAS points to go to Nottingham University in September 2022 to begin her undergraduate degree. Her first exam she felt went fairly well. She has a break now before her next exam and then has a few exams close together so it will be a tough week for her.
Jess has lots of support from her family, from her close group of friends as well as numerous work colleagues and they are definitely helping to keep her spirits up which is going to be a large part of this, trying to keep a positive mental outlook inspite of feeling so horrible physically. Daily we have parcels or cards arriving to take into her which help her spirits as well, to know so many people are thinking about her and rooting for her.
I am coping okay, still have nights where sleep evades me as does my husband and we just cuddle together and watch something on Netflix until we start to drift off. My extended family have been a huge help to us in all sorts of ways and I make sure to speak to one of my sisters or my brother each day and it helps a lot. I have my siblings, my mum, my dad as well as a step mum and an aunt I am very close to so I definitely have lots of support and I am very grateful for all of their love.
May 24th - contact made with The Little Princess Trust ( available if you are under 24 ) and tears all round after they told us they are going to provide Jess with a human hair wig as close to her usual style and colour as possible, Jess had her very long hair cut a few days ago into a short bob to get ready for the hair loss due to start later this week. Having a human hair wig will definitely help her deal with the loss of her own hair and hair loss is such an emotive issue for people to go through and when you are very young, your hair means everything to you, Jess has always had long hair, it is part of who she is and the loss of it would be emotionally very difficult for her to accept. One of my other daughters is going to donate her very long hair to the trust and it is her way of showing support to Jess and also helping other people going through the loss of their own hair.
May 25th - end of her first week of chemo and start of the new chemo drug the one which will cause her hair to fall out. We have been told this new drug is going to make Jess feel really unwell and very tired and drained. They are giving Jess strong anti-sickness drugs to help stop any sickness.
May 26th- 2nd round of chemo into a new lumbar puncture, she will need these weekly for the next 12 weeks,
I will update next week by which time we will have had the results of the first lumbar puncture to see if it has crossed to the brain or not, I have everything crossed that is hasn't as it will make it much harder to treat and to get into remission.
No words. Sending love and support to the whole family
I can relate to the exams. My youngest is the same age, has her last exam next week (we are in Scotland so it's May exams). We timed when we told her about my diagnosis until after her mocks and have been careful not to rock the boat.
I am glad your daughter is getting treatment and that there is hope amongst everything they are finding out. You sound a lovely close family, I am sure that will help you all find a way though. .
Thank you so much. We do have hope there, it is just getting to the end of the induction block 21 days to go and then a bone marrow extraction will tell us if the chemo is working and she is in a remission.
She then has another two monthly blocks of chemo before a final month block and then maintence for 6 months if all is going well. We just need to know whether the chemo is working or not, otherwise it will be a stem cell transplant. My other three are having blood matching soon to see if any of them are a 100% match for Jess. Hopefully one of them will be and they all want to be a donor if they are a match.
Sending much love to you all