Nervous journey

[Cyprusfan]

On way to see Consultant to get results for my 25 year old son who has ALL. Hoping MRD will be low enough this time ready for transplant.

Nervous morning just want this nightmare to be over.

Hayley

[Jm954]

Fingers crossed for him, let us know Hayley

sending best wishes

Jackie

[Cyprusfan in reply to Jm954]

Hi Jackie

Yes will update later

Thank you

Hayley x

[Cyprusfan in reply to Cyprusfan]

😡😡..that went well...appointment at 10 am for consultant...had his blood tests at 10....got in finally at 11.15 to see her. Bloody results from Kings hospital still not back to her ...she said it is usually a 2 week turn around. We had a good talk to her. She is pleased his blood levels have stabilised from her readings. Transplant team provisionally booked starting from 6th February as in admission. Chloe cell collection on 13th February then into nicholas in the night or 14th February. All that will still depend on MRD (minimum residual disease) levels being good enough this time to go ahead. She doesn't want to gamble with transplant at this stage until they are right down as there is more chance of it coming back then. If not down enough the Blinatinub bag gets put back in for 28 days. We got to wait for her to ring us later/tomorrow or possibly Monday with results. I worked myself up so much I was nearly sick coming out of there😔

[Jm954 in reply to Cyprusfan]

This waiting is agony for you all Hayley, fingers crossed for excellent news on Monday

Jackie

[Cyprusfan in reply to Jm954]

Hi Jackie

Meant to update before now. Consultant rang late afternoon . MRD now low enough to go to transplant. It's all systems go now he is having it 14th February, chloe donating 13th February. Going to be a very emotional time for us all. Got a pentnab appointment this afternoon it's a nebuliser that gives medication for the lungs by all accounts. They will tell us the admission date. I know he will have 4 days of chemo/radiotherapy prior to transplant. As a mother it will sadden me as it's his whole system they wipe out, a system that up until August kept him healthy and with no problems. I know that sounds silly.

No going back now is there. Sometimes I can't believe I am typing this. But am so grateful to have found support from everyone on here.

Hayley xx

[Jm954 in reply to Cyprusfan]

Hi Hayley,

I think my reply from a few minutes ago is on another of your responses. I'm glad the transplant can go ahead now and I'm sending lots of good luck and best wishes your way.

Jackie

x

[HAIRBEAR_UK]

Best wishes all is back on target

[Cyprusfan in reply to HAIRBEAR_UK]

😡😡..that went well...appointment at 10 am for consultant...had his blood tests at 10....got in finally at 11.15 to see her. Bloody results from Kings hospital still not back to her ...she said it is usually a 2 week turn around. We had a good talk to her. She is pleased his blood levels have stabilised from her readings. Transplant team provisionally booked starting from 6th February as in admission. Chloe cell collection on 13th February then into nicholas in the night or 14th February. All that will still depend on MRD (minimum residual disease) levels being good enough this time to go ahead. She doesn't want to gamble with transplant at this stage until they are right down as there is more chance of it coming back then. If not down enough the Blinatinub bag gets put back in for 28 days. We got to wait for her to ring us later/tomorrow or possibly Monday with results. I worked myself up so much I was nearly sick coming out of there😔

[HAIRBEAR_UK in reply to Cyprusfan]

Thanks for sharing. Sounds positive that his bloods are stable and the transplant is scheduled, Fingers crossed you both are not kept in suspense for too much longer and MRD is down. It will be hard to function with so much uncertainty, but try to look after yourself and stay positive, prepare. How is your son bearing up?

[Cyprusfan in reply to HAIRBEAR_UK]

Hi

I replied to Jackie above. Consultant rang late afternoon after face to face meeting. Results through transplant will be on the 14th February. Going to be a long few weeks

Hayley

[littledab]

Sending prayers that everything works out!!

Little dab

[2003UK]

Oh, I know that nervous morning of going to a medical appointment, I feel sick to the stomach just thinking about it. I also know how fatigued or tired I feel afterwards. As I have said before we are here to support you and if you need to talk to someone the Leukaemia Care Charity helpline is open Monday - Friday 9am until 5pm and they have a special evening service on a Thursday and Friday 7pm - 10pm. The number is freephone 08088 010 444. Take care both of you and let us know how you get on.

[Feline-Fan_UK]

Hi Hayley

So sorry to hear that the appointment didn’t go as planned. Remind me again which hospital you attend?

I’m assuming you are waiting for the results of the bone marrow biopsy?

Is good news though about the stabilisation of his bloods and that they are provisionally re-booking the SCT.

I am still waiting to hear about my new rescheduled SCT admission date etc

I had my ‘holding treatment’ last Monday, which was an IV a vincristine and an intrathecal of methotrexate.

Like Nicholas, my bloods seem to be holding up ok.

Hoping you get the results today and please do let us know what they say

Tamsin

X

[Cyprusfan in reply to Feline-Fan_UK]

Hi Tamsin

Meant to update before now. Consultant rang late afternoon . MRD now low enough to go to transplant. It's all systems go now he is having it 14th February, chloe donating 13th February. Going to be a very emotional time for us all. Got a pentnab appointment this afternoon it's a nebuliser that gives medication for the lungs by all accounts. They will tell us the admission date. I know he will have 4 days of chemo/radiotherapy prior to transplant. As a mother it will sadden me as it's his whole system they wipe out, a system that up until August kept him healthy and with no problems. I know that sounds silly.

No going back now is there. Sometimes I can't believe I am typing this. But am so grateful to have found support from everyone on here.

Have you had new date yet for your SCT

Hayley xx

[Jm954 in reply to Cyprusfan]

No, there's no going back Hayley and thank goodness he is able to have this transplant.

I presume Chloe is Nicholas' sister? This will make them incredibly close, there is no greater gift than this gift of life that she is giving him.

Please update us as you feel you want to, I will be thinking of you all and saying prayers.

With very best wishes

Jackie

[Cyprusfan in reply to Jm954]

Hi Jackie

Yes Chloe is Nicks sister. She is already telling him she wants a domino pizza delivery every Saturday.

It's a lot for her to take on emotionally it isn't as easy as what it seems this decision....to outside people looking in. Initially she was frightened and reluctant to do it because of the unknown . People have said to us "oh there would be no discussion I would do it"......honestly it's not that easy.

In the bath and feeling a bit tearful all of a sudden don't know where that has come from.

Thanks for your support

Hayley

[Jm954 in reply to Cyprusfan]

Hayley,

I think it's so good that you are sensitive to Chloe's emotions and the huge weight of responsibility that she must feel. In her mind must be the fear of the transplant failing and it all being her fault, which of course it wouldn't be. I'm glad she's joking about bribes and making light of it as much as she can.

The advantage of using Chloe's cells are that they will be a good match, she's close at hand so the cells haven't been flown across europe or even half the world (nice and fresh) and if they need some donor lymphocytes to help boost the transplant then that will be easy too.

You may remember I told you that my son was a donor for an unknown person and he didn't find it very easy. There's quite a lot of pain when having the GCSF injections as your bone marrow expands to make the stem cells but paracetemol took the edge off it for him.

Nicholas probably feels guilty putting Chloe through all this too and you must be worried for both your children, it would be enough to make be tearful. They'll both be looking to you for support and for you to be strong and, being a Mom, you'll do it.

You've got this Hayley - just this final part of his treatment and then you can breathe easier.

With every best wish and a gentle ((( hug )))

Jackie

x

[Cyprusfan in reply to Jm954]

Aw Jackie I felt that hug. Hospital chats are very straight to the point. First one we had with chloe transplant nurse ..she said chloe it won't be your fault if something happens to nicholas as in dies!!!!...she started crying my husband hugged her and said that's not going to happen. Nurse said I am duty bound to not have heard that.

As parents what are we supposed to say to our child. But I know they have to say it.

I don't feel particularly strong today

Hayley

[Jm954 in reply to Cyprusfan]

Gosh that was brutal Hayley. That nurse sounds rather lacking in compassion and empathy.

Just a few days to go now ........

Prayers for a smooth procedure

Jackie x

[Feline-Fan_UK]

Hi Hayley

So glad to hear it’s good news for Nicholas (&Chloe), 👍🏻but yes understandably worrying for you (hugs)

All system go here too!

Being admitted today! 7 days of reduced intensity chemo, starting

today, then SCT on 11th 😬

xx

[Cyprusfan in reply to Feline-Fan_UK]

Hi

That's wonderful news your in. Start of putting this nightmare to bed. That sounds same as nicholas he will have intense chemo/radiotherapy for 4 days I think.

Just had admission date 7th February.

Best of luck...please stay in touch

Hayley

[Feline-Fan_UK]

Ah yes they do the more intense chemo on younger people! I’m more than twice Nicholas’s age, hence reduced!

Not long for you now! 🙏🏻

Wishing you all the best and yes do keep in touch!

X

[Cyprusfan in reply to Feline-Fan_UK]

Hi

How is your treatment plan going. 2 big days are getting closer. Daughter donates Thursday 13th February and Nicholas transplant 14th February. All systems go.

Hope everything is good with you.

Hayley x

[Blue_Turtle_UK]

Just caught up on your updates and you will have started by now. Hopefully it feels a relief to have finally got going for all of you.

Thinking of you all in the next few weeks x

[Feline-Fan_UK]

Hiya

Yes, all good here.

Had my SCT yesterday! Went well. Feeling ok today.

Hope all goes equally well for Chloe & Nicolas! 🙏🏻

xxx

[Cyprusfan in reply to Feline-Fan_UK]

How is it going post SCT. Nick got bad ulcers and muciositus spelling maybe off!!

Hayley x

[Cyprusfan]

Brilliant news, I am so pleased. We are sitting next to chloe she is donating at moment. She was a bit faint and wobbly earlier on 😔

Nicholas having his SCT tomorrow

Hayley

[Christiana_]

Been following your story, Hayley.

Hope you’re all doing as well as can be expected. The stage of treatment your son is going through now was such a hard time for me.

One step at a time.

Moment by moment.......

x

[Cyprusfan in reply to Christiana_]

Thank you. He got a mouthful/throatful of ulcers at the moment.

[Christiana_]

So tricky.

Can be difficult to eat/talk/exist.

A peer told me flat full fat coke helped him at this stage. I was glad of macdonalds milkshakes on a spoon (both high calorie).

It does pass xxxxx

[Jm954]

How’s it all going with Nicolas’ transplant Hayley? Was Chloe ok too? x