Thanks Guys for your support and advice. Yesterday, the consultant came and spoke to us. It was an honest but very difficult conversation. Danae’s cancer make up is very rare and aggressive. The stem cell match work has been going on in the background (apparently) and no ‘full ten’ match has been found in the world. He discussed some other options.
@GemmaBloodCancerUK - I have sent an email to book in a chat with you please? I believe you have lots of experience in this field.
I am in shock and have cried loads for my beautiful girl
@SarahMum gosh I can only imagine how you must be feeling, I’m so sorry things are so tough at the moment. Good to hear you’ve booked a call in with @GemmaBloodCancerUK. We’re all here for you and we have everything crossed for Danae.
Hello there @SarahMum.
It sounds like a really difficult conversation and I am sure you have so many questions. How is Danae doing after all this?
I have sent you an email today with some dates and times so I really hope to speak to you soon.
Kindest regards
Gemma
I’m sorry to hear this, @SarahMum - that must have been the hardest thing to hear. BUT many of us are told we have an aggressive mutation and/or poor prognosis because of the mutations - which is exactly why we have SCTs. I was in the same situation. Did the consultant mention that people do have SCTs from donated cells that are not a full match? I’ve heard of people having cells that are as low as a 50% match - usually from relatives, in this case.
Am thinking of you both. It’s just awful getting this sort of news, I know. It feels like one hammer blow after another. But things can and do turn round. X
Gosh @SarahMum that must have been so difficult for you and Danae to hear, but at least he was being honest with you.
At least there are some options out there to be considered.
I am also glad that you are in contact with Gemma.
You and Danae must be in shock and it’s natural and OK to cry loads, it is so much better than bottling it up.
Be ever so kind to yourselves you are both in shock, we are all there to support you both and also if you would like to just speak to the Blood Cancer UK line on 0808 2080 888
Hi @SarahMum any sort of treatment that is unknown is scary and a stem cell transplant is no acceptation. Plenty of people on here who have had one, including me so the support will continue for you both.
I was told more or less straight away by the consultants that the only cure for me was to have a stem cell transplant. I asked what the other options were and I was told if I didn’t have it or refused it I would dead within 2 years. I know that sounds rather harsh to hear but it was the missing piece of the jigsaw for me as I was definitely in two minds about having the transplant. From the diagnosis I was very much I’m going to get through this and 2 years wasn’t enough time to do more with my life.
They asked about siblings and contacted my sister. I knew she wouldn’t be able to do it after having Lupus years ago, it came back as a 50% match but as expected they couldn’t use her. Deep down, I didn’t want to receive my sisters cells as I knew if it didn’t work then she would have that feeling of guilt and I didn’t want her to have that hanging over her.
The only option was to find a donor and Anthony Nolan are brilliant not only for what they do but there website has so much information that it really helped me understand the process.
A 10/10 match is a great result, I was fortunate to get that as well.
Thanks everyone that has replied. Danae is better today after a few days processing all that she has been told. I guess the scariest thing is the lack of suitable donors? I did ask about putting out an appeal but the consultant said it was highly unlikely a match would be found for Danae.
She is waiting on next bone marrow sample (which will be on Wednesday) She is day 33 today and still no neutrophils… We will then have a better idea of what round 2 will look like.
On a positive- all infection is gone and she eats little and often food that she fancies. I cook her meals and take them up in a food flask. She is sleeping lots and we take that as a sign her body is healing.
We have also downloaded an app called Time Tree - it is like a virtual memory jar. We can both posts updates in the calendar- stuff that makes us laugh in Hospital. We can then go back and look at all the silly things we found hilarious. It is great and relieves the boredom of being holed up.
Thanks and great to hear a 10 match was found for you. Unfortunately, this is not the case for Danae. There is a 9 but not yet sure if they are still a viable donor so other routes are being explored to include a 50% from me or a cord blood donation.
It all feels scary and overwhelming but Danae and I are determined to explore all that is on offer…
Sorry, I misread your previous post about the 10/10 match. The team will be doing all they can to find the best match possible for Danae.
I was very similar with my neutrophils after my first round of chemo. It was very frustrating and I couldn’t get out of hospital. I eventually had a frank discussion with the consultant as nothing seemed to be happening. They did another biopsy and then changed the my chemo regime.
Yes the information is overwhelming at times. Danae is very lucky to have you there supporting her. I wasn’t able to have visitors when I was in hospital due to the pandemic so trying to remember everything was difficult especially when you are on meds. My dad would come to the important out patient appointments and it was great to have a second pair of ears to help digest all the information and make decisions.
Hope everyone is enjoying a lovely weekend? Apologies, it seems like ages since I have been on here - so much has happened?! But I guess you are all well aware that is the nature of the journey we are or have been on…
Firstly, a huge thank you to @GemmaBloodCancerUK for your call. I was sooooooo low that day but your friendly, caring and informative touch was just what I needed.
So my beautiful girl is home for a break. She finally started growing those neutrophils and got to 0.7 (I know!) . Two bone marrow biopsies = inconclusive results and left her heartbroken. We got allowed out on short trips for good behaviour and that really helped. Her other stats improved and she has started producing platelets like nobody’s business. So yesterday her consultant said to go home for a break . I haven’t stopped smiling since.
We return to day unit on Wednesday for bloods, dressing change and full ‘apple core’ bone marrow biopsy (they are going to sedate her) All being well we can go home again and then return the following Wednesday for results and date of admission for round 2.
No more news on stem cell transplant other than her consultant feels best option would be a cord blood transplant.
But for now, I take great peace and pleasure that Danae is home and currently having a very peaceful nap.
Thanks again to all who read my waffle, offer support and generally make things seem less scary and more positive.
You are all an amazing group of very special people
Hi
Just caught up with your posts after a holiday. I needed a Stem cell transplant for my unusual mutation. There were 4 9/10 matches world wide, I was told one of these was happy to donate but for some reason it fell through. Cord cells were talked about but in the end my daughter donated, she was a half match. My transplant was in April 2022 and I have completely recovered and feel very well. Hope you get a good result too, will be thinking about you and your daughter.
Oh @SarahMum so great to hear from you.
Gosh it really is a rollercoaster and so much can happen in a short space of time.
I bet Danae is so happy to spend some time in her lovely own bed, with you looking after her.
Also I am hoping you are able to have a bit of a rest too, I expect you reaaly do need to recharge your batteries too.
You are both on this scary, emotional, physical and practical journey, just in slightly different ways, it is completely draining and exhausting
Plus your maternal instincts are in there as well.
We are always there for you, please do use us and the Blood Cancer UK support line.
Really look after yourselves, rest, be kind to yourselves, spoil yourselves and have fun. xxxxxxxx
Thanks for sharing your positive story @Suey . This is a wonderful outcome for a haplo transplant. I have given my blood to be tested and am awaiting outcome but they shared that the outcome may not be as good as I am an older candidate. For now, it is great to have my girlie home
Dear @SarahMum
Thank you for the news about Danae, it is so great to hear that she is home, that the neutrophils are creeping up and that those platelets are flourishing. Sending positive wishes for the next bone marrow test, it must have been so upsetting that the first was inconclusive. Sadly this can happen when the bone marrow is just starting to regenerate.
The picture of Danae is so powerful, she looks like she is breathing in that fresh air with all her strength, it is so good to see.
Please keep talking (it is never waffle), send our best wishes to Danae, enjoy some cheesy tv together and embrace this time at home with your girl.
Thanks for your lovely word too, we are all here for you both.
Speak soon,
Gemma
Aw, have got tears in my eyes reading all that, @SarahMum. I understand how utterly amazing the home breaks are, and how anxious the waiting for results can be. And that picture of Danae coming out of Derriford, breathing the fresh, free air after weeks of warm, filtered hospital stuffiness and confinement - my goodness, that takes me right back 2 years. I’m sure just the thought of you, and home, and a rest from the awfulness of treatment made her weep with relief. Bless her. Please give her a huge hug from all of us here. Take care. X
I have just read your story , it is such a rollercoaster journey that we are all on but whether we can say it’s good or bad , we are on it together.
Helping each other along the way as best we can.
To see your daughter going through this will be truly heartbreaking for you.
I’ve got everything crossed for you both.
The apple core bone marrow is certainly not comfortable so I’m glad they are going to sedate Danae. I’ve only had one of those but 7 other bone marrows.
You wonder where you get the strength from at times.
Lovely to see that Danae is getting some home time, that really helps. Your own bed & own surroundings.
I just want to with yourself & Danae all the best.
Sending lots of healing thoughts to you both. x x x
Apologies for radio silence - there has been lots going on.
Danae had the bone marrow biopsy and she was allowed home . I had her back for 10 days - it was magical. I fed her up and she put on weight. We went out one day and sat together on a bench, in the sun overlooking Looe island. She turned to me and said, ‘Mum, it has been soooo lovely being home but we both know this can’t go on forever. I am ready for round 2’. Even now typing this, I have tears in my eyes.
So a few days later we went to day clinic and received the news that biopsy indicated that she was in remission. I don’t think anyone was expecting that but we took that as a real positive. She went back on the ward that afternoon and had now finished day 8 of liquid chemotherapy. She now starts a new targeted tablet form to prepare for transplant. So she starts Midostaurin today for 2 weeks. She asked about coming home again and consultant said if was up to her - if she felt comfortable as the doctor cannot prescribe preferred antibiotic - ciprofloxacin as it doesn’t get along with the Midostaurin. If she chooses to go home in a day or two they would send her home with penicillin but that doesn’t do ‘the right job’ ?? Any thoughts or experiences re: thus drug are welcome . Some possibilities re: stem cell transplant but nothing definite yet so not going there for the moment. *this bit is still scaring me loads and is what causes me sleepless nights atm.
She has done really well in this second round. She bought a Nintendo switch and has it linked to TV in her room so we are currently undertaking Mariokart races with her laughing at how rubbish I am
Hope all is well with everyone else out there. I think of you all and as always, send you all positive thoughts and love.
Lovely to hear from you I am currently in the QEUH Glasgow. Admitted on Tuesday and treatment started Wednesday !
Pretty quiet so far but I’ve been told most people won’t feel any side effects until around day 6 or 7 and once the new cells go in I may feel yukky until my body starts to settle.
I hope Danae is keeping well , is she at home or back in the hospital ?
Sending you both massive hugs and my very best wishes … it’s so hard to manouver our way through this awful journey.
. Two bone marrow biopsies = inconclusive results and left her heartbroken. We got allowed out on short trips for good behaviour and that really helped. Her other stats improved and she has started producing platelets like nobody’s business. So yesterday her consultant said to go home for a break 
. I haven’t stopped smiling since.
x x x
. Some possibilities re: stem cell transplant but nothing definite yet so not going there for the moment. *this bit is still scaring me loads and is what causes me sleepless nights atm.
I am currently in the QEUH Glasgow. Admitted on Tuesday and treatment started Wednesday !
x x x