TODAY is World Blood Cancer Day #WBCD and we’re marking the occasion by glimpsing back to this same date in 2014, which was a little over seven weeks after Margot returned home from Great Ormond Street Hospital (GOSH). Margot had duel lineage leukaemia and a bone marrow transplant (BMT) was considered to be her best chance of surviving her blood cancer.
The excerpt below is taken from my private journal. It was a happy time: the BMT team at GOSH were very pleased with Margot’s progress and we all believed that she was finally on the road to recovery.
This video conveys how we felt at the time. Blood and marrow test results in March that year indicated that Margot was showing “100% donor cells” so the BMT had been considered a success. All the cells were donor cells, which meant there was no leukaemia detected in her marrow.
We were told that it was now 99% certain that Margot was disease free.
This morning, I watched this video for the first time in years and found myself shaking my head. You just never know.
FYI a little bit of graft versus host disease (GVHD) is considered a good thing, because it tends to be accompanied by GVL (graft versus leukaemia).
Margot would not have had the opportunity of a BMT were it not for her wonderful donor.
You can help others, like Margot, by registering as a potential stem cell donor: www.dkms.org.uk/team-margot
Please then encourage ‘Just One More’ to do the same.
THANK YOU for all your support.
Yaser, Margot’s father
Together, saving lives
28 May 2014
Day 97 – Margot removes her Naso Gastric (NG) tube
Margot’s cot is in our bedroom & shortly before 05:00 this morning I am awakened by the sound of her milk pump beeping; Margot has turned over in the night and is lying on top of the milk tube, causing an occlusion.
So I move her sufficiently to reposition the tube and I’m able to restart the pump without issue.
5 minutes later, I hear Margot coughing and then shortly afterwards she calls out for me.
As I get to her cot I see that her NG tube is now out and the milk is pumping out into her cot.
This is the first time Margot has ever removed her NG tube. The hospital have warned us of the risk of this happening and the potential dangers associated with overnight feeds: if partly dislodged, the NG tube can end up positioned incorrectly by her lungs and present a risk to life.
Snot on Margot’s forehead suggests to me that she probably rubbed an itch on her nose which then dislodged the tube sufficiently for it to cause irritation and that led to her pulling it out.
Today happens to be the first time in two weeks that Margot is due to go back to GOSH for a check up and Pentamidine infusion via her Hickman line. As such, she will have bloods taken and we are to hold back from giving her ciclosporin. This is the drug that also causes her to vomit and so we are now faced with the prospect of either taking her to GOSH early, or giving her the oral meds via her mouth (as opposed to via NG tube).
The other meds, Ciprofloxacin, Amoxipenicillin & aciclovir don’t smell too bad ! so that’s the plan for this morning.
Sometimes plans change ! so let’s see…
10:00 Community nurse visits home and new NG tube is installed. This means the 07:00 meds are late being administered and we need to delay the rest of the meds for today.
Vicki & Margot are heading into GOSH today for 14:00, so no ciclosporin this morning anyway (it interferes with the ciclosporin level blood test).
Margot’s blood results from today:
White cell count 5.79
Platelets 130 (significantly better)
Good progress Margot !
29 May 2014
Day 98 – The BMT team say they are very happy with Margot’s overall progress
Good conversation with Rachel in the BMT team this afternoon who confirmed that the BMT team are very happy with Margot’s progress.
1. On 10 June we will go into GOSH at 08:00 for the bone marrow aspirate and
2. Our next BMT dr appointment will be on 25 June and they will call us prior with the bone marrow aspirate results. There’s some suggestion that if the next one is also clear, there may not need to be another bone marrow aspirate for some time. Actually, Rachel said “we won’t need to do another one again”, but following my challenge she conceded that Margot would probably still have another one a year post BMT.
3. We will reduce the overnight milk pump feed to 250ml, with the new overall daily fluid target being 1,000ml / day. To monitor and verify at next blood sample.
4. Vicki & I to discuss & consider the Hickman and NG tube matter (practicalities about whether we need them to remain in any longer than absolutely necessary) so that we are ready to discuss when we come in ie once ciclosporin has been weaned off completely. Wow. Lines coming out ?!
5. The Immune system metric (CD4) was last 50 and it ought to be c.300 – this will now be checked monthly, the next time will be when Margot’s in for the bone marrow aspirate on 10 June.
All in all, a positive conversation !
31 May 2014
Day 100 – GVHD ?
As we reduce the ciclosporin dose (now at 0.2ml, twice a day – down from 0.5ml) we are expecting to see some signs of GVHD (graft versus host disease) and are ’on watch’ !
This morning I noticed these little spots / rash and have sent photographs to the BMT team at GOSH (see photos).
Today is 100 days since Margot had her bone marrow transplant. It’s more a symbolic number than a meaningful medical landmark, but it feels good nevertheless !
Margot is otherwise in good form, aside from some flaring up in the bottom department.
BMT Dr on call: “It probably is GVHD”
15:55 I speak to Dr Juliana (who is the BMT dr on call this weekend).
She listens to the symptoms, sees the photographs I send her and agrees that it is probably GVHD. Any fevers, vomiting or diarrohea ? No to the first two, but Margot’s stool has been loose for as long as we can remember.
She recommends that we take the ciclosporin back up to 0.3ml tonight (because for the last week Margot has been fine at his level) and keep her posted.
Daktacourt cream on the bottom.
We are to keep her posted and call back over the weekend if there are any problems.
In a way, this feels like a bit of a set back. But we are assured that this is completely normal and par for the course.