MDS & Pregnant Update 3

Please post here your experiences of MDS as a patient, carer, family or friend

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MDS & Pregnant Update 3

Post by Milly » 15 Apr 2016 18:41

Hi Everyone

Well I haven't been here for a very long time but I've finally got around to updating you on my progress.

Shortly after my last post my consultant hospitalized me for fear I'd miscarry whilst at home on my own, I spent a total of 15 weeks on the Haematology ward. During which I had 2 types of chemotherapy whilst pregnant which both failed miserably, as I walked round like there was absolutely nothing wrong with me whatsoever. Luckily baby was completely unaffected by the treatments that we knew of at that stage, and to be honest I felt as healthy as a horse for the first time in years.

In late July my biopsy showed as 80% with Leukaemia and the decision was made to birth the baby under general anaesthetic by Caesarean Section. And on the 28th of July my beautiful baby boy was born, completely healthy at week 32 weighing a mere 3lb 4oz he was tiny. Baby did marvellously not requiring breathing support or intensive care just minimal support such as feeding via a tube. Following lots and lots of tests he was safe to come home and the consultants gave him a complete clean bill of health, miraculously my leukaemia and chemo had not affected him in any way what so ever. What a little fighter I have been blessed with.

Unfortunately to my horror when reading his notes I discovered that at the time of having him I was given only 5 weeks to live.......complete shock and upset as I read this as you can imagine. I immediately got hold of my nurse who'd supported me throughout this process to find out if it was true, at the time of birth it was true I only had a short time due to the advancement of the leukaemia. However my biopsy following babys' birth showed the leukaemia had gone in complete reverse and I was now in remission showing less than 2% blasts and the Flt3 gene had completely disappeared. No one can explain how or why this suddenly happened but it did and now my consultant was happy to put me through SCT.

So finally in November I had my SCT and was discharged 5 weeks later just in time for Christmas, unfortunately since then I've been plagued with colds, coughs and any other bug that saw me coming even though I didn't step outside the house apart from hospital visits, so I've spent the majority of this year so far in and out of the ward. I've even had Chicken Pox believe it or not.....I became the hospital culture dish of diseases for a while. Thankfully my family have been totally supportive putting their lives on hold to take care of the baby when I've been admitted or not physically up to it myself. My sister has become a surrogate mother and my mum has been by my side everyday throughout the process, coming to the hospital every single day I was admitted from midday until late at night bringing me food or anything I basically needed or wanted.

Baby is now coming up 9 months old and is normal for his age, his appetite is more than healthy and he's just broken through with his first tooth. His consultant is over the moon at his progress and how he's developing so I'm happy in the knowledge I didn't hurt him in any way and I made the right choice for me.

My current position is I'm 149 days post transplant and finally starting to recover from all the bugs, in the last couple of months my weight has dropped significantly, I'm now down to 8st which isn't healthy for my height at all which I put down to the amount of illnesses I've had since Dec, in fact they are threatening to tube feed me....not a bloody chance. My last biopsy showed 2% blasts and flt 3 had returned but my consultant assures me this is normal and has put me back onto a funded drug as a precautionary measure only.......can't help worrying though I just want to hear the words 'there is no trace of leukaemia blasts your transplant has worked', when I hear that I'll feel a little more settled and relax.

Now I'm just fighting to get healthy again, regain control of my diet to put weight on and build myself back up so I can have baby back home permanently where he belongs.

All the staff in the hospital have been fantastic throughout this, supporting me and caring for me but my consultant and specialist nurse I cannot give enough praise to for everything they've done to date and making my little boy a reality as well as keeping me going throughout.

I hope everyone is doing well themselves and if I could post photos I'd share a picture of baby with you, but alas you can't as the file is too big :(

Milly xxx
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Re: MDS & Pregnant Update 3

Post by stormproof » 16 Apr 2016 22:06

That is quite amazing.
Strength to your arm. May the force be with you!

You could upload the photo to Google Drive or dropbox and post the link if you wanted....
Posts: 95
Joined: 07 Mar 2013 11:22

Re: MDS & Pregnant Update 3

Post by christina » 17 Apr 2016 18:08

Am so happy to hear you have a beautiful baby boy, have to admit was wondering how you were getting on, so pleased your treatment is going well, all the best for the future months ahead, hopefully the summer will make us all feel better, Christina
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Location: Essex

Re: MDS & Pregnant Update 3

Post by chris » 20 Apr 2016 17:23

Dear Milly

I am so very pleased to hear that you had your baby and he is so well and heatlhy despite the enormous health problems you had in pregnancy. Just goes to show how amazing the human body can be! I hope that the SCT continues to be effective and that you soon start to feel healthier. You can eat calorie-rich foods as much as you like to try to boost your weight again!! Thanks so much for letting us hear the good news and keep well.

Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
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