Child with PV

[Greenbus99]

Hello, I am new on here! My son was diagnosed with Jak2 PV last August aged 14. Is there any other parent or child on this for who might have PV?

[Rachelthepotter]

I’m so sorry to hear your teenage son has PV. I haven’t any direct experience to share, as I’m part of this forum because I have MF, but I hope people here can help you find the answers you need. Do keep in touch, as treatment for MPNs is developing fast and this forum has people who're brilliant at following the latest research and telling us here about it.

All my best wishes.

Xxx

[Greenbus99 in reply to Rachelthepotter]

Thank you for taking the time to message me and I will keep on the forum to keep abreast of whats new in MPNs and also hear how other people are coping. Thank you x

[Ebot]

Hi. I can’t help you directly but first, others have posted in the past about being diagnosed as teenagers and second, Maz, might know of other parents / kids in a similar situation and may be able to put you in touch. So do keep watching this Forum and if you haven’t already, check out the MPN Voice website. (I’m not sure if you are based in the UK.) Wishing you and your son all the best.

[Greenbus99 in reply to Ebot]

Hi Ebot, thank you for replying, that is very kind of you. Yes, we are in the UK and I have been in touch with Maz already via the website, she had a contact of someone who was diagnosed at a young age with ET but my son at this stage doesn't want to buddy up with anyone just yet, maybe at a later time. He has been amazing and has come to terms with his diagnosis in his own way and we have been so proud of him. I will keep in touch with the forum as its good for me to learn and chat to people who understand. Many thanks, Christine

[Ebot in reply to Greenbus99]

I was thinking that maybe parents sometimes need support networks more than kids at this stage 🙂. I hope your son is well right now and off meds. I know adults in this situation and quite honestly once the initial shock is over and / or the condition is under control they just forget about. Kids are also incredibly resilient especially with great support behind them. Wishing you all well.

[Greenbus99 in reply to Ebot]

Thank you, kids are amazing at how well they cope with things. Conor has been involved in all discussions with doctors from day one. We wanted him to be in control of his condition from the off as he will be living with it. He insisted that the doctors speak directly to him with us listening, he has questioned decisions, even asked his consultant " do you think your missing something"! His consultant rang me back the next day and told me , she thought about what conor said, called a MDT meeting and decided ;yes they could be missing something and made changes to his treatment.Having greater information and ownership of his condition and this has helped him manage this huge change in his life. He is living life as normal sometimes with a few bumps along the way. He has regular venesections, on aspirin and Interferon injections but tolerating these well. He just has to learn to manage his fatigue. Thank you so much for your kind messages.

[Ebot in reply to Greenbus99]

Conor sounds like an amazing young man. You must be so proud of him.

[EleanorPV in reply to Greenbus99]

Hi Chisitine, Sending you support. Wow Conor sounds very mature. The first year, I struggled with this process and I'm 51. Well done Conor, taking control of his own body and questioning decisions. I have been diagnosed, with PV, for 2 years. In the beginning I found it very difficult to question the professionals, which led to my health suffering. Eventually I got my head around the fact that I knew my body best. You must be one very proud mum xx

[Ewadd]

Hello, I haven't been on here long either, have just been reading other peoples posts. My son is 13, he was diagnosed with Jak2 ET in September 2015 when he was just 10. It has been really difficult as MPN's are so rare in children and we don't know how things will work out. Even his haematologist has never seen an MPN in a child. He currently is on no meds and just has quarterly blood tests and a BMB every year. I just try to remind myself that he has time on his side.

[Greenbus99 in reply to Ewadd]

Hello Ewadd, thank you for messaging. So sorry to hear you and your son have been going through such a difficult few years. I really hope your son is doing well and coping with his diagnosis, such a huge thing for a young child to have to deal with. As a parent we often do some of their worrying and I personally had an emotional journey when he was first diagnosed and my son accepted it better than me .Although he did have a setback in January following a TIA and has been having counselling weekly since this, but he feels more like himself again. He has had 4 TIA's since last August, has had 16 venesection's and now on Interferon injections. He sees his Haematologist 4 weekly. We have been so lucky to have such amazing medical care and support at Addenbrooke's hospital in Cambridge. He turns 16 in September so sadly he transitions to adult care . This worries me as we lose the amazing support from the paeds team, strangely we will miss them all, truly special people, and we are very grateful for the care we have received. Really wish you and your family well, you are right, our boys do have time on their side and with the advances in research and medicine hopefully they will be the generation where a cure is found. We can only empower them to understand and manage their condition and this gives them control from a young age . We are so proud of our son, he has matured so much within this past year. Are you based in the UK? Take care xx

[Ewadd in reply to Greenbus99]

Sounds like your son has really had a tough time and has had a lot to cope with. Hopefully things are more under control now so as he can get on with being a teenager and enjoying life. I agree, it is such a lot for them to deal with but they just seem to get on with it. He suffers a lot with headaches and fatigue and knows that the best thing for him when he is feeling like this is to rest rather than to keep fighting it. He certainly seems to deal with it all a lot better than I do. When he was first diagnosed my husband and I were totally devastated and it has taken this long to really accept his condition and be confident about the future. It's a shame that you will have to move on from the paeds team that have given you so much support I'm sure they must also be sad to see the children they treat grow up and move on. Yes, we are based in the UK, my son is cared for by our local hospital and the specialist team at Leicester Royal Infirmary who are in charge of his care.

Look after yourself, it helps to share your worries xx

[Greenbus99 in reply to Ewadd]

It sure does help to share , already after a couple of days on this site we do not feel so alone with this diagnosis. I was hesitant to join a forum as i didn't really have the emotional strength to deal with other peoples problems but now in a much better place. I think I understand how you and your husband felt, and for me not being able to protect my son from this was the most difficult thing to accept, my husband and I both felt we had let Conor down. We have taken our lead from Conor and how he has taken this on with such courage, and optimism and life goes on as normal, its just a new normal! LRI is a good hospital and its good to have the local care for those unexpected emergencies. We too have joint care with our local hospital when he has had an acute problem and needs to be assessed but main haematology is at Cambridge, and he will stay under their care in the adult team. We feel we have had the best care in the world and Addenbrookes have sought advice from Clare Harrison also, so we feel so lucky. I will take care, i hope you do too. Christine x

[christiev in reply to Ewadd]

Hello

Just felt the need to be in touch as my 13 year old daughter is going through tests at the moment following monthly monitoring blood tests for 6 months from GP - increasingly raised platelets. She has now been referred to an MPN specialist to investigate. My older son (age 21) has MF and there appears to be an increased chance of having an MPN if a close family member does - so, my daughters bloods are attracting more attention than perhaps they would if no MPNs in the family. So I await with interest - and anxiety- to see if perhaps 2 of my kids have an MPN! Seems unlucky and unlikely, but I am bracing myself for it! Glad your son is doing well - its a big deal, but I remain optimistic about the future and hope you can too. Remember to look after yourself as well.

[Greenbus99 in reply to christiev]

Hi Christiev, I was just wondering wondering how your daughter and son are doing? Did your daughter ever getba diagnosis. Really hope all is well x

[christiev in reply to Greenbus99]

Hello! Thanks for your message which I’ve only just received. Hope you and family still all doing well. My son continues at uni but his MF has progressed a bit recently which has been tough to hear about at clinic, though I guess not unexpected. His spleen has enlarged further below the ribs now and blasts in blood up to 3% (from1%) but on the whole he has remained generally fairly well. He has been struggling a little bit with what I reckon must be anxiety about it all over the last few months - he says he feels cross at times and just wants to be a normal 21 year old. He has no treatment at all at present , just v regular monitoring, but he knows that there is this big ‘stem cell transplant’ event in his future and he struggles to know where to place that in his life plans. He would like to do his PHD overseas but can’t plan that as he knows that he needs to stay near his medics in London... or maybe he doesn’t? He finds it all very frustrating and gets a bit sad about that. But he’s still doing sport (captain of his team!)and achieving great things academically and enjoys a beer or two with his mates so things could be worse!

Meanwhile my daughter ( now age 14) continues to have bloods monitored - her platelets still raised and white cells all over the place! But she was triple negative so, no Jak2, CALR or Mpl. She feels well. She goes back and gets bloods checked with my son - a rather peculiar regular family outing! My older daughter has begun university and is studying medical science. She’s decided to go into the field of genetic Mutations and particularly MPN research and is excited by the rapid progress - she’s full of optimism for her siblings which is cheering for us all and I hope for all MPN-ers and parents too.

Hope you are managing well - sending you warm encouraging wishes. V.

[christiev in reply to Ewadd]

Hello

Just felt the need to be in touch as my 13 year old daughter is going through tests at the moment following monthly monitoring blood tests for 6 months from GP - increasingly raised platelets. She has now been referred to an MPN specialist to investigate. My older son (age 21) has MF and there appears to be an increased chance of having an MPN if a close family member does - so, my daughters bloods are attracting more attention than perhaps they would if no MPNs in the family. So I await with interest - and anxiety- to see if perhaps 2 of my kids have an MPN! Seems unlucky and unlikely, but I am bracing myself for it! Glad your son is doing well - its a big deal, but I remain optimistic about the future and hope you can too. Remember to look after yourself as well.

[Greenbus99 in reply to christiev]

Hello Christiev , thank you for getting in touch with me. I am so sorry to hear about your daughter going through all these tests and it would just be so unfair if she too was diagnosed with MPN! 13 is such a difficult age without the burden of their health to worry about also, really hope you get a good outcome from her results and that she remains fit and healthy. How is your son doing? What age was he when he was diagnosed ? we are all doing well, emotionally I struggled a bit at the beginning but now we understand things well and have had excellent care and support we are just living life as normal, with occasional bumps along the way but we overcome them. Thank you so much

[christiev in reply to Greenbus99]

My son has been fantastic which has helped me hugely. He's very measured and taking it in his stride and is confident that all will be well. Phew! He was diagnosed 18 months ago. We are off to London tomorrow morning for another check-up but generally speaking, its all a bit of 'watch and wait' at the moment. One of my daughters (not the one being tested) is a 10/10 stem cell match for my son so when the time comes for a transplant she's ready! My son is at University in Scotland so travels a fair bit for his appointments as he (and I) feel so confident with the clinic he attends in London that it feels silly to change. Hopefully my youngest daughter will find some calm from seeing how her brother has coped with everything - she's become very used to needles and hospitals and waiting rooms and all that. Both are being cared for by 'adult' clinics, so the whole waiting room thing can seem a tad dreary for my youngest one at times as everyone else sitting around must seem so ancient in her eyes!! I'll let you know how we get on, but I reckon we won't know full details for my daughter til September, The wait is tough for me, but I'm managing! Keep in touch!

[Greenbus99 in reply to christiev]

Wow what a remarkable young man your son is, you must be so proud of him? This is so reassuring to hear that he is enjoying Uni and life to the full. Our kids are amazing how they take things in their stride and deal with the here and now rather than worrying about what might happen. Really hope you have a positive outcome for your daughter. Why is she being cared for in an adult clinic ? It must be such a worrying time for you, hope you are doing ok. Sometimes its the not knowing that is more worrying as no control over the situation. Stay strong and keep talking , Christine x

[piggie50]

Hello, there is a lady who posts on the forum occasionally her tag name is kentuckyrain. I met her 4 years ago at the London day. Her daughter was diagnosed at the age of 4 with ET and when they re-checked her heel prick test from a baby, they found she was born with it. She is a lovely lady and I’m sure if you private messaged her she would be happy to talk.

Best wishes

Judy

[Greenbus99 in reply to piggie50]

Hello Judy thank you for messaging. Gosh that is unbelievable that a baby can have ET,that poor mum! I am hoping to go to the london forum later this year and possibly meet and chat to people. My son at this stage just wants to come to terms with things on our own first before chatting to other people, he has been coping really well with his diagnosis and has accepted things well. Thank you again for information. kind regards

[JaynieQ]

Hello Greenbus99

I’m afraid I can’t offer much help as I’m an old burd with ET.. but I send you and your lovely lad my very best wishes. And I echo what many have already said, you’re part of an excellent forum with many kind and knowledgeable people who will all want to help.

Jaynie x

[Greenbus99 in reply to JaynieQ]

Thank you Jaynie, we are doing ok. That is so good to know there is kind people who can help and support. , many thanks x

[pontygirl]

Hi Greenbus99

I'm in the same category as JaynieQ Older Hen just diagnosed ET & MF. However I have 2 sons and 2 daughters and I remember well how we worry at each and everything that hurts them.

Spending 3 nights in hospital with my youngest child for surgery X2 brings everything into focus..

You and your family are going through a very difficult time but you will get there and it will ease up. I'm hoping your daughter doesn't have MPN, if she does what a shining example her brother is. You must be very proud of him getting on with his studies, he will be of great help to his sister.

No words needed, she will see and accept.

I'm just learning about MPN's but the One Thing I have learnt on here in 11 weeks is the Generosity and Genuine Care and Share attitude on this site.

A good place for parents who are doing the worrying for and with their children.

Take Care of you and yours.

Mary x

[Greenbus99 in reply to pontygirl]

Thank you Mary for your kind message.Yes as parents we are forever worried ! My daughter is fine and in good health, she has been fantastic and very understanding and supportive to Conor, she is 12. Thankfully we feel we are on the right road and things are settling down and life is going on as normal as it can. Only after being on here a few days we have already gained so much reassurance and support from lovely people like you and I no longer feel we are dealing with this on our own. Thank you again xx

[Wyebird]

Hi Greenbus, I’m sorry to hear about your son’s diagnosis. It’s going to be hard for you. You’ll have to learn to read his body language. Glad you’ve been in touch with Maz.

[Greenbus99 in reply to Wyebird]

Hello Wyebird, thank you for messaging. It has been hard, accepting it at the beginning was a very emotional time, ut as long as we deal with the here and now and keep the lid on what might be we can cope much better. Finally joining in this forum has already given so much reassurance and support. I emailed Maz when Conor was first diagnosed but he does not yet want to buddy with anyone at this time, maybe at a later date. Thank you again x

[Angelinagaffer]

Hi I am sorry to hear about Connor's news, I have PV and ET , Connor might like an App called headspace, I find it very useful, it would b good for you too. I have a son with chronic renal failure since babyhood, I found he started to rebel against his treatments ,he is now 30 and on Dyalsis. Kids are resilient, resourceful, creative and strong. Take time for yourself and take time out with your other children with out Connor, my youngest complained and still does that his brother got all the attention, he even saw hospital appointments as a day out that he was excluded from. They are the major anxiety provoking situations I found living in a family with a sick child. Get some counselling for yourselves, the anxiety slowly builds and can b extremely overwhelming and over powering so it is good to have strategies in place. Otherwise enjoy, have fun and fill each day with laughter, lots of love Angelina xx

[Greenbus99 in reply to Angelinagaffer]

oh Angelina bless you that is such a lovely message and thank you for sharing your valuable experience. We do make sure that our daughter has time with us alone to do nice things so she never feels forgotten. Thankfully ( so far ) she and Conor are very close and great friends and as a family we love enjoying doing nice fun things together. I will check out headspace, it sounds really good. Thank you for your advice. Christine x