I have tried to write this lots of times over the past few weeks. I’ve started deleted and started again, this time fingers crossed 😀
This rollercoaster keeps on giving. Emelia has had 2 more cycles of chemo since my last blog. The first one seemed to go well, but she needed more blood, which was arranged to be given straight after chemo finished, unfortunately due to staff issues this didn’t happen until a few hours after, which meant an extra night in hospital, this was distressing for Emelia, the chemo makes her emotional as it is, lack of sleep and then just waiting adds to this, its hard to see as I can’t do anything to help – so we did a moonlight flit albeit at 5am 😂.
We managed a few days away in the woods with wildlife although that does seem a life time ago already. We returned home for Emelia’s second covid jab on the Saturday, Sunday morning Emelia has a high temperature and is shivering but hot, we ring the out of hours number to be told bring her in we have a bed for her on the special receiving unit, so an 6am trip to Nottingham it was. We were told they will take bloods but probably a reaction to the jab, so the waiting starts again. They start antibiotics as a precaution, lunchtime comes, then teatime, it becomes clear we will be there for the night, so we request a z-bed for me, or Mark would have to drive over from Lincoln to pick me up, Emelia would rather I go home than sleep on the chair, luckily they do find us one by 10pm. During the night the ward doctor comes in to take more blood as the last ones were spoilt. It took all the next day to cross match her blood, her mood was very low, we discussed going home and coming back early Wednesday before chemo to have the blood, luckily the blood came at teatime so we were able to leave at 8pm, home with oral antibiotics ready for chemo on the Wednesday.
Wednesday arrived and we had to chase the ward to find out when to go in, finally at 2pm the ward rang and said they will have a bed shortly but not a teenage bed. She was in a side room again. After chatting to the teenage cancer nurse she said they are going to jazz up the side rooms and also put a TV in them, this will really help. Once we got settled we were informed that chemo hadn’t been scheduled!! It would now not start till Thursday, the only thing we could do was order a Dominoes – Emelia’s consultant visited and apologised as he hadn’t ordered chemo, he had been waiting for some blood results and then forgot. He looked at the vaccine injection site and he thought it might be cellulitis so he said it would be good to give more antibiotics via the PICC line to get on top of the reaction/infection so not having chemo is a good thing. This time they stopped one of the four chemo drugs as you can only have so much doxorubicin. She does seem much better this time round without it.
On the following Monday we went up to Manchester to start the preparation for Proton Beam Therapy. They booked us an accessible apartment to support Emelia with her vision loss and mobility issues. Its a 2 bed apartment in the city centre. Which we will use when we are there for 6 weeks, for this week they allowed both myself and Mark to be with her, for the 6 weeks only one of us, so we will take it in turns. There is a shuttle bus from the apartment to the children’s hospital and then to the proton beam centre. Emelia’s first appointment was at 9.30am Tuesday, we used the bus to get there, it was heart breaking to see the little ones going for treatment 💔 babies and toddlers seems so unfair.
First appointment was with Emelia’s key worker, and he was fab. We then met the consultant she explained the side effects, discussed what the process is and generally got to know Emelia a little bit, I did ask if this would get rid of it, she said that’s the plan – yay good news at last 😀 we will take that. After seeing her we saw an occupational therapist who talked about how they can help after treatment, she also ordered a wheelchair for Emelia- this brightened her up as its the first time she felt that someone has talked about after treatment. The whole centre is strangely calm, the staff are relaxed no hustle or bustle, they are all so welcoming.
Wednesday- this was a tough day for Emelia, they need to fit a mask which keeps her still when having the treatment as there is no room for error, the mask is warmed and then placed over face and neck, with several people molding it to her face and neck. Another key worker was there to support her, he is a well being worker, and he supported her through the process, she then had to have an MRI and CT scan whilst wearing the mask, thses scans are diagnostic scans so we don’t get any idea of how well the chemo is working, these scans are used to plot where the beam will go, where it needs to hit. I asked about the artieries to the brain as the tumour is around this, what the side effects could be, but at this time they don’t know as they haven’t done all the planning/plotting yet. She was told there is no room for error which means no losing or putting on weight, she was not happy to hear this as she had decided to try a lose some of her weight gain from the steroids.
Friday we saw the chemo consultant he explained that Emelia can have her chemo, but as a day case, no over night stay, she is normally in over night because of the flushes to protect her liver and kidneys, which is 2 x 12 hour bags. They can give her it over night in a bag which she can take back to the apartment, they will also not give her Actinomycin chemo drug as it reacts/adds more radiotherapy or something like that. He also mentioned that if we were under his care they would have done a genetic test, he feels there is a reason why she has a Alveolar Rhabdomyosarcoma and that I had cancer young too, it has been mentioned to me before, just wasn’t in the right frame of mind to think about it then, something to discuss with Nottingham team i think. Then she saw a physio who gave her some exercises and a crutch to help with balance.
The Christie experience was a positive, calm and relaxed one on the whole 😊 she starts treatment on the 21st June, we hope and pray they can blast the bugger for now 🙏
Wow! That really is some journey! It seems like you are in very good hands now and I hope the next leg goes smoothly. It sounds like they expect this treatment to work and you will all be in our thoughts all the way. You are a brave and beautiful team!
Lots of love as always, Linda and John xxx
Sending you love and hugs and finally some positive news for you all.keep strong always in my thoughts.
It seems such a tough journey for poor Emilia my heart goes out to her and you Adrian even. I keep on praying and if there anything I can do to help just give a shout – LOVE & hugs Xxx