Filip’s journey with Fanconi Anaemia

29/06/2025

🔛 A much awaited weekend this was, where families sharing similar worries got reunited as a reminder that we are not alone.
When you see such dedication from the specialists, the care they offer, being human with each other, you feel hope and the reassurance that things are moving in the right direction, progression is made towards a brighter future for FA people.
That brings me peace for the time being knowing that we are looked after and support is available when need it...we are not forgoten.
I am so grateful for all the efforts put by Fanconi Hope Charity to accomodate such retreat in an amazing location, away from the 'crowds'.
🎊Kids had an amazing time with all kind of activities organised for them and have built good friendships in these 3 days.
It was just fabulous 👏 and thank you to everyone organising the event, you've all done an amazing job.
I am already looking forward to the next one 😆🥳. God bless!🙏

22/04/2025

The foundation needs our contribution for the research and since May is FA month, I found a great opportunity to create this page to help out.
There is no progression without research and I am so grateful for their efforts and the work they put in any aspects of FA.
We hope for a cure!🍀
🙏thank you all for your kind contribution

Since finding out about our son's condition 4 years ago, I always wondered when is the right time to do something for this amazing foundation that supported us during critical times=>  this May is a start for our family to do something good in return

08/03/2025

🎈🎊Can you believe has been 1 Year already?🏆
Last year we've celebrated 8th March on a different setting, surrounded by beeping machines deliverying heavy meds, with nurses coming in and out our room, we were nervous, scared, isolated, and at the same time not knowing what to expect next.
A year ago something wonderful occured, an amazing young girl has donated her bone marrow to save a life and Filip was the lucky one to receive stem cells to help him move on, while dealing with Fanconi Anemia.
It wasn't an easy journey to say the least, but while God gave us strenght and looked after us in his misterious ways, we were fortunate for all the care and love received from family, friends, doctors, nurses, teachers. God is good!🙏
With hospital visits being reduced to twice a year, is wonderful that Filip has now fully recovered, bloods are back into normal range, and that he has started school this January. Filip really enjoys school and spending time with his peers, he is doing tennis lessons which he loves and exploring nature in the free time.
Filip is so resilient and optimistic about anything, I wish I could have his level of energy and passion about learning new things.
I'm including few pictures from our escape this weekend and lets hope we can repeat these moments more often.
👉Happy 1st Re-Birthday darling, you are precious to us and we are so proud of you!
🧡🧡🧡Much love, mama, tata and Nicole🧡🧡🧡

11/12/2024

⏰️ 10 months post transplant 🌈LINE removal!🌈
A day to remember for sure is the day the line comes off. Each sedation feels like the 1st time despite lasting for about 30 mins, with emotions being all over the place right now, but this day has been mentioned since the line went in...
and is now really happening.
🌻After today, let's call it freedom, free to swim, free to bath, free of being scared, free of emergency kit, free to rejoin the school mates and most important free to feel normal again...yeyyyy
Past few weeks have been good, and apart from a 3 day hospitalisation for FLU, it went smooth without any major incidents.
An MRI was performed for a persistent dry cough and were told this is related to a minor fungal infection in the lungs so will need oral medication to clear it (approx. 2 months treatment)
Filip's blood counts is almost back to a normal range after being up and down since the transplant, only the Neutrophils are playing a bit at the moment- could be linked to his recent infection (flu)/treatment he received and hopefully will improve in the weeks to come.
It's time for us now to take a short break and enjoy the Christmas holidays🌏 and I know who is really looking forward to it....
With this in mind we wish you all a peaceful end of the year, reflect on the year that has gone by, and put your hopes in the one to come. Thank you all for your support and encouragements, it meant a lot for us!
☃️❄️❄️Happy Holidays❄️❄️☃️!
💙 Love FILIP 💙

08/09/2024

⏰️ 6 months post transplant
It's hard to look back when all the 'fun' has started , it is impossible to imagine what the future will bring, but look where we are now and it's so amazing to be present and take things in slow motion.
🌈When we were in our doctors office the other day, he mentioned the magic words ... 'end of the transplant' that we are approaching the end of the treatment... it was emotional, I did not known if I should start crying or laughing, this is what we were praying for and hoping to occur since the beginning.
In the past few weeks, Filip had to treat the CMVirus re-activation which can get aggressive if untreated, therefore the oral Vanganciclovir (type of antiviral medication) has knocked his counts and affected the cell production in the bone marrow. As a consequence to that, white cells have decreased and needed the IV stimulant twice a week, platelets were reduced and also the hemoglobine, to the point when he needed blood transfusion (once).
Filip also had wooping cough lasting all summer from which he is now fully recovered.
Than, moving from Ciclosporine to Tacrolimus I guess that had it's benefits in reducing the extra hair, however in Filip's case, I found it more toxic than the precursor with impact on his kidneys, potassium and bicarbonate. During our bi-weekly visits to hospital, these unbalances had to be addressed each time with temporary corrections
The good news is that we are now reducing the dose of the immunossupressant and by the end of September, it will be fully removed from his protocol.
Aproaching the end of the treatment means that the medication will be slowly reduced until hopefully there will be none and his own immunity will take full control🙏
Despite everything else, Filip enjoyed the summer, the time spent with us, the company of his friends that he missed a lot while in isolation.
🌞I think we can now gently see the end of the tunnel and hopefully not long until we come out of it safe.
❤️ God is always with us ❤️

19/07/2024

⏰️ Day +134
Despite the few updates in here lately, it's been busy and I will try to capture most relevant news in the next paragraph.
Hospital visits are still twice a week for Filip when we drive back and forth to London for blood tests and any treatments he might need based on the results, or the dressing change once a week. He had a bone marrow biopsy at the beginning on July and with 70% cellularity, doctors are pleased on the recovery, meaning that he has plenty of cells to form new ones. These are great news, however for various reasons, his blood is not exactly where I would like it to be ...I know I want things to happen fast, but his body is still under the effect of the treatment received for CMV and BK virus ended a while back, hence the slow increase in bloods. I refer here to hemoglobin and white cells, while platelets are doing good.
In the purpose of improving the counts, Ciclosporin was replaced by Tacrolimus, a different immunosupressant but it has additional side effects to the previous one, mainly on kidneys and electrolites, affecting mood in general (I am not a big fan of it at all after seing what it can do in less than 1 week)
As a concequence to that, mostly Potassium being to high, we were readmitted last night in the hospital.
We suppose to have a treat at the Cosmic House, to sleep over in a fancy room with great facilities provided by the hospital, but due to the fact that K increased a lot in just few hours, and high K being linked to heart disease, we rushed to the A&E at 8pm. It only took 4.5h until we finaly got a room in the ward and went to sleep, so it was a short night for us but thankfully Filip is well and K went down again.
On top of that he has wooping cough (irritating cough) and was put on a 5 days course of antibiotics to stop the spread, seems to be a big thing in the UK at the moment with many cases reported so far.
He will be monitored today and hopefully we can return home later today if the electrolites are better.
Outside hospital visits, Filip has few hours of school time when the teachers are coming over to our house for few hours a week and he still enjoys that.
He also did some cycling, walking in the woods and supported his sister at the sports day- he was the loudest on the field 😀
With not much plans in the horizont, we take each day as it is and hoping that soon things will go back to normality. God is good!

12/06/2024

⏰️ Day +96, 6th Birthday
Today we've celebrated this pur heart.
Filip was counting days since May and could not believe that his day has finally arrived, the day he gets full attention and lots of surprises lined up. For sure he was spoiled a bit but that's what birthdays are for, to have a special day and make the most of it.
He's been going through a lot, with ups and downs, in such a short time, and he deserve the moon to be honest, for being such a brave and strong little man during this times.
It's been also 3 months since the transplant day, Filip has started to show improvements in the BK virus meaning that he has no symptoms anymore and hopefully these will not return (and no more traumatic treatment). While CMV is negative, he now has to fight a bacterial infection in the urinary tract which is currently treated with a 3 days course of antibiotics (I suspect he got it from the last cateter insertion in the bladder when applied in the theater)
His counts are not ideal but could be worst (in need of blood transfusion etc) and these are monitored for now.
To conclude todays post, Filip is doing well at the moment and all we can do is to pray for his bloods to get stronger and stronger...🙏
❤️❤️❤️🎂Happy 6th Birthday, my beautiful soul🎂❤️❤️❤️

03/06/2024

⏰️Day +87
We are back at the hospital for the usual checkup, part of the bi-weekly routine. It's been with up and downs lately, when we thought that Filip's bloods were doing so well, was enough to get stronger antivirals to treat CMVirus and BK virus to actually knock down all the improvement made so far.
It's so frustrating to see this hapening and demotivating, but apparently this is expected and 'normal' at this stage in transplant.
On Friday, Filip had again the bladder treatment for BK virus (catheter insertion), the 3rd procedure done so far , under general anesthetic, to minimise the trauma this has caused previousely. Plus 2 doses previousely infused through the lines, a total of 5 heavy doses of antiviral divided in 5 weeks ...a long time to fight a stuborn virus with uncomfortable symptoms (imagine cystitis) and this it is still ongoing. BK is still present in the urine therefore there is a high chance there will be more treatments coming in the next weeks until the symptoms goes away.
This is topped up by CMV virus, present in the blood, which wakes up when it feels like it, with a stronger antiviral added to the protocol, to ensure it stays low enough and not causing any symtompms (can affect the vision, internal organs, hearing and many more)
On top of that, MMF (immunosupressant) was re-added to the medication list couple of days ago to hopefully boost the T cells (immunity cells). Based on the last carmerism, this are not looking great mainly because the donor's T cells have decreased slowly rather that growing, so from 27% in just 2 weeks they went down to 7% . The difference are Filip's own cells which we want to reduce and become nill, to be on the safe side. Doctors are confident that by reintroducing the MMF alongside Ciclosporine, Filip's own cells should go down and not fight agains the new ones we want to keep.
Apart from fighting 2 ugly viruses while fully immunosuppressed, Filip is keeping up well, a strong boy who is very conscious on what is going on around him and mature in thinking.
We try to get some of the normality back when we are out of the hospital, keeping my insanity under control and not to overthink... We are grateful for things as they are now and hoping they don't get worst, that's all I wish for.
🙏God is with us🙏

18/05/2024

⏰️Day +72, rest day
Filip had the catheter fit yesterday for the medication to be administered directly in the bladder rather than IV.
He was sedated prior that and he suppose to sleep through it, but this was not the case and he woke up when the fun begin. It was horrible, traumatic, for an hour he was screaming and telling doctors to stop, why are they doing this to him, that he needs to urinate and cannot hold the medication in. Thankfully is over now and he managed to keep it in for 30 mins which should be enough for the medication to do its job, I really hope was worthed and will never be needed again...
Pain remained once they remove the catheter, so the morphine followed that to make Filip more comfortable. Sedation and morphine together can put down a horse, and so Filip was asleep for the rest of the afternoon until 6pm when I woke him up to drink and eat something.
Another way the doctor wants to approach the virus, is by infusing antibodies from one of the parents into Filip to help with the recovery. At the moment they are testing both, myself and the father to see if one of us have antibodies for BK. If we do, that's amazing but if we don't, we will need to hope that Filip's own immunity will start functioning to keep the virus in leash, considering that one of the immunosuppressants was stopped 2 weeks ago.
In general, apart from the BK virus, which is the annoying one right now, Filip is doing well and most of the blood counts are stable, still needs an improvement on the Lymphocytes and RBC. His hairs have started to grow, but due to Ciclosporin that he is on, hairs are present all over the body not just the head. Eventually when we stop Ciclosporin, in few months time, any extra hairs will fall.
❤️We appreciate all your prayers and we still need them ❤️
God help us🙏🌈

17/05/2024

⏰️ Day +70, Re-admission no 2 (16/05)
Here we are again, readmitted at 7th floor at St. Mary's Hospital in London.
I've mentioned it last time that BK virus was present in Filip's urine, causing frequent urination and occasional pain. Following the diagnosis of BK cystitis, Cidofovir was continued on a weekly basis, and after 2 doses, it started to affect the production of blood cells in the bone marrow, so the doctors decided to change the treatment from IV to local (directly in the bladder) before does more damage.
With this in mind, Filip will be sedated for a catheter to be inserted in his bladder and medication will be put through, clamp it and hold it for about 30 minutes...not sure how he will be able to do so since he now urinates every 10 minutes 🙄.
I hope that everything goes smooth and will add another update soon
🙏God help him🙏

04/05/2024

⏰️ Day 58, return HOME
It was around 1pm when the doctor came for visits today and after seing Filip, they asked the big question we were waiting for some time: "Do you want to go home today?"
After full 4 weeks in the hospital how on earth could we say NO to that. Filip's face has suddenly changed and radiating with happiness, while keep asking me if this is real, if we can go home. Yes, yes, yes...a well deserved break from the hospital is needed, we need a bit of normality back in our lives and being home feels like heaven right now.
We (or I) forgot how is to sleep without being disturbed few times a night, the monitor beeps, or the noises present most of the time on a hospital ward, or how it feels to be back in a large bed rather than 2 people squizzed in a single bed for a month. I could list here many more but will stop....It feels really good to think this is in the past and we are back Home to our loved ones.
Filip's CMV levels came down to a neutral value therefore doctors have stopped the treatment yesterday for this virus, however he now has to deal with another annoying one called BK virus, affecting his bladder. The treatment for BK is a lenghtly one, once a week and heavy on his kidneys, but despite the treatment, it might stay forever in his body. Same time, doctors have stopped MMF, one of the immunosuppressants to let his own body fight this virus along de medication and strenghten his immunity.
There are risks associated with this decision mainly because is still early in the transplant phase to cut on the immunosuppressants, however there is no better choice mainly because if there is to much damage to the bladder (caused by BK virus) Fanconi Anaemia patients might never recover from it, and is better to help the body heal before the damage is present.
🌈All we can do is to hope that Filip will do well and pray for a continuous recovery in his journey. 🙏🙏🙏
Tonight, is the night of resurrection in orthodox religion and wishing you all a peaceful Easter 🫂
HRISTOS A INVIAT!

30/04/2024

⏰️ Day +54
I woke up with high hopes this morning, thinking that in few days we might go home, and able to properly celebrate Nicole's 8th birthday on the 2nd May. Any of these plans were wiped out quickly when I spoke to the doctors this morning.
The CMV (Cytomegalovirus) is coming down, currently 68 but we need it to be under 34 to be considered negative. Is a very good trend considering that at some point was over 4000 units in the blood, I should be grateful for that.
The thing is that is not just the CMV that we need to get rid of now, but another virus might needs addressing. From 2 days ago, Filip was complaining about pain when passing urine and doctors think this is related to BK virus...I tried not to google it, but it really bugs me right now.
So until we know for sure that this is the case, is probably best to wait for the results and doctors plan moving forward.
Filip is well in himself, happy and energetic, gets so excited from little things and I hope it stays the same.
We are now heading into our 4th week of re-admission and nobody can tell us how many more weeks until we can go back home. It doesn't sound promising, I know, and I have no options but to keep going...all these will end some day.
At least we are not fully in isolation and can go outside for walks once or twice a day.
Sending positive vibes from this little man
🙏God is with us🙏❤️