Well…we both got some sleep last night . Yesterday was a busy day. Lots of people coming and going and talking to Danae about what’s next. She was referred to The Little Princess Trust for a wig (She has beautiful hair and this has proved a really upsetting element for her ((and me)))
She has signed permission for chemotherapy to start and got the line put in (her arm) She is still bleeding (a little) from this procedure so we are awaiting a nurse to come check that.
Last round of bloods indicate that the leukaemia cells are increasing quite rapidly- hence starting chemotherapy today. I have a dark shadow sitting on my shoulder that is a realisation of what might have happened had she not decided to get a blood test for anaemia (only a week ago!!!). I am thankful that everyone is ‘on it’ and moving so quickly.
My love and admiration for my daughter swells in my heart every day.
It’s good to hear that Danae is settling in and getting support from various directions, @SarahMum. It must be very overwhelming for you both though, adjusting to this new environment, and even the words ‘leukaemia’ and ‘chemo’.
As others have said, I should take each day as it comes and not rush into decisions about work. I should think you have a bit of grace yet on that front.
Your daughter made an extraordinarily good call on the blood test front - thank goodness for that. As a mother myself, I can only begin to imagine how dreadful this whole situation is for you though, watching your daughter go through this. But she is so lucky to have you there.
First dose of chemo complete for Danae yesterday and all went well. I went home for a sleep last night. Whilst there is a realisation that I cannot stay with Danae every second of the day I still felt really guilty and home seems so empty without her there.
But I got a good nights sleep and will now get up and shower. Sort some bits and then head up to watch the Coronation with my lovely lady
Hi @SarahMum I am so glad that you went home last night and got a good nights sleep, so, so important.
Perhaps have a word with Danae today and tell her how you feel and the guilt you have if you are not with her 24/7.
Has she got things to occupy her probably like her mobile, magazines, a light read, a hobby etc.
Enjoy the Coronation with your lovely lady and I bet neither of you will ever forget where you were when Charles and Camilla were coronated.
You and your lovely lady are doing brilliantly.
Well, we watched the Coronation and had a few giggles . The day then became rather eventful. Danae’s line arm started to swell and they detected a clot (not in line but around it) Oh, the irony?!
They gave her an anti clotting injection (to clear clot) and then platelets (to help re-clot) her blood. We finally got off to sleep at 1:00am.
This is the first time I have seen my gorgeous girl wobble. She was so upset and said she felt she couldn’t get through all of this. We had a good chat and she was okay. I think she is just shattered. Uninterrupted sleep is now a thing of the past.
We both slept but this morning Danae woke up with blood (dripping on floor) from line arm. They have patched her up and we are waiting on doctor. It looks like she will go for emergency scan on arm today and they will consider putting a new line in (possibly Hickman?)
When people said the journey is not going to be an easy one there sure were right.
I feel scared, angry and upset but I also feel extremely thankful for the amazing team who are caring for my gorgeous girl. All treat her with respect and gentleness. Yes, sometimes the waiting times seem to go on forever but that is through no fault of their own.
So let’s see what today brings…. Let us hope for a successful line so Danae no longer has to worry about that.
So sorry to hear this, @SarahMum. Those PICC lines are quite a nuisance - I actually preferred my Hickman line (although they look more dramatic and uncomfortable, I found mine more comfortable, once used to it.) I hope all this gets solved today.
Yes, the twice nightly Obs are a real problem for decent sleep, aren’t they? It might be that as the chemo goes on, Danae gets more sleepy and dozes a lot throughout the day, which will help. I can’t recommend sleeping at every opportunity enough. It passes the time during the long stays in hospital, and is an escape from the scary reality, and obviously, it is good for healing and recovery.
I think everyone must have several wobbles, @SarahMum. If you can see them as a sign of successful processing of a situation we instinctively want to deny, that may help. Coming to terms with the situation allows us to move forwards more calmly, I think. I’m sure you’re hugging her and helping her through it. I hope you have similar help.
Hi @SarahMum, thank you for updating us. I’m so sorry to hear the difficult day you and your lovely Danae had. It’s so understandable to have been feeling scared, angry, upset- any and all of the feelings are normal at this time. You’re clearly a wonderful support for Danae, take good care of yourself too and remember our Support Team are here if we can help at all (0808 2080 888 or support@bloodcancer.org.uk). I do hope all goes well with the line today.
Hi @SarahMum how are you standing up emotionally, physically and practically, to the events and waiting for and of treatment. I often think looking on, helplessly, can be worse than experiencing sometimes.
I bet you are scared, angry and upset, that is natural.
Yes, are the NHS staff brilliant, we are so lucky.
Danae is in safe hands and she will have such natural wobbles, it is a lot to take in. and @Fullofbeans has given you a brilliant response and as @TanyaBloodCancerUK the support line is there for you especially if you have a very natural wobble.
You need all the sleep you can get too.
Sending you both virtual hugs xxx
Dear @SarahMum
I thought I would check in to see how Danae was doing today and whether the team managed to sort out her line?
Hoping you both have managed to get some naps in at some point, it is such an exhausting time for you both.
As ever, we are here for you and Danae if you should need anything.
Take care
Gemma
Thanks for checking in. Line not yet sorted but an ultra sound confirmed no clot so that was good news.
The swelling has gone down quite a bit so tomorrow she will go for an X-ray and they will put some dye in the line to check it.
They have been using a cannula for everything which hasn’t been ideal for the ‘red’ chemo drug (sorry can’t remember it’s name - the stuff that makes your urine go red?) Danae reports a really unusual stinging sensation. The nurses feel the vein has been agitated by the chemotherapy drug?
Bring on tomorrow and an X-ray. A positive is Danae has been feeling okay and has eaten quite well today (little and often). We are now laid out and watching I’m a Celeb
Hope you have had a great BH weekend and thanks again for checking in.
Thanks @SarahMum for the update, please keep doing so as and when you can.
There certainly is a lot of waiting for and waiting around isn’t there, however it sounds that Danae is holding up but I am also concerned about you.
Be kind and spoil yourselves xxxx
Hello @SarahMum
Thank you for taking the time to update us. Really glad that Danae is feeling ok considering all that is happening just now.
The ‘red’ chemotherapy is Daunorubicin and you are quite right that it turns the urine red. It can indeed irritate the veins so the nurses will keep a close eye on this and use intravenous fluids along side the chemotherapy to try and reduce any issues.
Hoping that today brings some plans for the line and sending you both our best wishes.
Glad you are getting time to watch the tv and hopefully have a giggle at I’m a celeb!
Take care
Gemma
Thanks all . Danae has a new line in and so far, so good. They couldn’t wait for scan to be done on the other one as doctors insisted chemotherapy needed to continue so we went down at tea time yesterday and got a new line in which helped Danae feel a lot more positive
Danae also had a visit from the hospital therapy dog (Milo) yesterday and a delivery of balloons from her Uni buddies
A Young Live vs Cancer social worker also visited and advised that most parents obtain a fit note from their GP to allow them the time to support their child. Does anyone have any experience of this please? Any advice much appreciated.
As always, thanks again for all your support
Sarah xx
Hi @SarahMum great news regarding the new line. I had 3 in 6 months, one pic line and 2 hickman central lines. I found the central lines a lot more comfortable than the pic. When I was without them getting cannulas put in every day became a real nightmare.
A fit note is basically a sick note from the doctor to give you time off work. Be careful though your employer may seem supportive at the moment but if they can save money by not paying you they will take advantage of that. Not all employers are equal. Always worth checking your employment contract about your sick pay entitlement. Sick pay SSP is £109.40 per week and paid for a maximum of 28 weeks. If you get full pay for any length of time they can claim SSP from when you go off sick so the 28 weeks may happen quicker than expected. This will form part of your pay.
If you have a Maggie’s centre or even McMillan can be a great resource for any information regarding help with work and money matters.
Oh, great to get the update on Danae @SarahMum and I always love pictures.
What a beautifully worded card from Danae’s Uni buddies., Love the balloons too.
Really glad Danae has got a new line in and that Danae feels a lot more positive.
I hope Danae enjoyed her visit from Milo.
Also a really useful visit from a Young Live vs Cancer social worker and @Muzza has given you a useful response.
How are you holding up @SarahMum?
Look after yourselves
Thanks for this advice. I am fortunate to work in a Government department so their attendance policy is very clear and supportive. I have asked to take next week off and will have a chat with my manager upon her return from A/L on Monday
I am pleased to report that things have settled somewhat with the new line in. Danae has managed to get some good sleeps in and that has really helped her positivity
I didn’t go to the hospital yesterday as my Sister visited. So I managed to get out on my bike which is my happy place.
One of the doctors spent time with Danae yesterday and outlined next steps. She also wrote down what is left in the first round. I found this really powerful in a positive way. Danae did too
Hope the sun is shining where you all are. I am heading up to see Danae later and have a Eurovision sleepover
. Yesterday was a busy day. Lots of people coming and going and talking to Danae about what’s next. She was referred to The Little Princess Trust for a wig (She has beautiful hair and this has proved a really upsetting element for her ((and me)))
every day.
. The day then became rather eventful. Danae’s line arm started to swell and they detected a clot (not in line but around it) Oh, the irony?!
dog (Milo) yesterday and a delivery of balloons from her Uni buddies 
which is my happy place.