Jenny ***
Being a parent is hard. Being a parent to an 8 year old girl is really hard. Being a parent to an 8 year old girl when you are about to go into hospital for HSCT is really, really, unbelievably hard.
Although I am still waiting on a confirmation date for my HSCT to start, my husband and I decided a few weeks ago that we needed to tell the kids about my upcoming treatment. We were aware that me suddenly disappearing to the hospital would be strange, and that home life will change for a time, so it felt right. Whereas my son (aged 10) seemed to take the news ok, my daughter was a whole new kettle of fish. I didn’t go into the nitty gritty about the treatment, but I did summarise it by saying:
- It will hopefully help my MS in the long term by reducing the likelihood of further damage.
- It will mean that I will have a week away from the house in the first instance then about a month in the hospital after that
- That unfortunately, because of the medicine they are going to use, I can’t have children visiting me in hospital due to the bugs that they may catch at school
- That I will need to rest a lot afterwards and they might not be able to have friends to the house for a while in case they bring in any germs
Well, NOTHING prepared me for the reaction from my daughter 🙁 Let’s just say that she was… upset, crying in a way I haven’t seen her do since she was tiny. In particular about the fact that I wouldn’t be at home for a time. To say she’s a ‘Mummy’s girl’ is an understatement – “who’s going to read me a bed-time story?”, “I’m going to miss you taking me to school”.
I wish I knew the answers to make her feel better. She was placated by the fact that we can Skype and I can read to her over that, but the reality is that I don’t know how we’re all going to cope. I feel bad for my husband and the mammoth task he will be taking on, just as he is starting a new job. I worry that I will embarrass my kids with my lack of hair (though, I hasten to say, I didn’t mention this part of my treatment to my daughter right away, after seeing her initial reaction to the news) . I know that HSCT is the right decision for me in the long term – I would regret it if I didn’t go for it – but that doesn’t mean that preparing myself and my family is easy.
Telling my kids has made me realise just how different they both are. My daughter wears her heart out her sleeve and reacts right away, whereas my 10 year old is more reflective. My son had few questions and a big cuddle for me. But both of them have been, shall we say, challenging since I told them. Of course, it could be unrelated and just due to the fact that school holidays always lead to a bit of unrest… I’m not sure. But they both seem a bit angrier than normal. I’m coping with that by trying to stay calm myself (the Yoga with Adriene video on ‘stress’ is being played a lot!), encouraging them to run around outside and by spending lots of 1:1 time with them. Boggle tournaments and movie watching seem to be the key!
When I finally bit the bullet and mentioned my hair and the fact that I may lose it they were both surprisingly ok. They both said they would be happier if I got a wig (Ava wanted me to have long, multi-coloured mermaid hair), but when I tried one on they both agreed that a scarf would actually be better. I’m glad – I haven’t had that kind of dark, swishy hair since I was in my 20s and it just looked wrong. Like young hair with a 40 year old face, lol.
I’ve told the kids that it would be a big support to Daddy if they can help out around the house when I’m away and my husband has told them they are going to eat pizza every night and have parties when I am gone! I know that they will all be fine and I am trying to focus on the positives, like maybe I can get through a few books when I’m away, or start a new crochet blanket. And of course the health outcomes for my MS.
If anyone has ever spent some time in the hospital away from their kids, I would love to hear about your strategies for helping them adapt and cope with the change. For now, I just need to wait for that letter to drop through the door with my date to start… hopefully I won’t have to wait that long!
Till next time,
My heart aches for you all. But this is worth doing and you will all get through it. I wish you every success possible.x
Thank you so much Rachel! x
You’re doing this for your children’s future as well as your own. Good luck. I had to travel to a hospital in a different city around 2 hours away to receive my first round of Lemtrada last November. I stayed in a hotel about a 15 minute taxi ride from the hospital and travelled to and from the hospital for the 5 days. (Severe bed shortage here in N. Ireland). My two children stayed with my in laws for a week. I explained that my immune system would be getting a reboot so to speak, daughter was quiet, son who is autistic with ADHD didn’t take it so well. But he came round in the end. A phone call each evening after treatment helped reassure them that I felt fine just a bit chesty and tired. (Even though I felt so rough!!) I spent quite a bit of time in bed once home again, and had to be so careful with foods I ate and especially hand hygiene.
I had my dogs and kids around me as soon as I got home, they were such a delight to have around, germs and all. Unfortunately, I caught the flu and a chest infection … then again it was the middle of winter! I’m due round two in a few months. Hoping it will help slow down my progression long term. And I hope that HSCT will do that for you, too. Kids are resilient.
Don’t be too hard on yourself xx
Thank you so much, it is great to hear your experience 🙂 I’m sure that I will be just the same when I get back too, I won’t be able to resist lots of cuddles! I’ve been told to stock up on the hand gel, so I’ll make sure that I do that. I hope that round two goes well for you. I don’t know very much about Lemtrada – it is a yearly infusion? xx
Oh Jen, I guess with such things we never know how we or others will react. But you and your family will be more resilient than you think, you’ll find ways to cope, to make it through, day by day. I’m just so sorry you’ve had to had such difficult conversations and things to think about for when you’re away for treatment. Keep the end goal in sight; to be there for your family and spend quality time with them and see if this treatment can help with your MS. It will be worth it. You will all be okay, even if you’re not sure you can see how things will work out, they will. Sending huge hugs xxxx
Thanks so much Caz. I know it will be worth it and I’m sure the time will go by quickly. I’ve been advised to speak to their school for support, so I think that I will do that. I think that knowing that others are there for them too, as well as our family, will help me deal with it xxx
Long term this treatment will hopefully help you and your family enormously. They will all cope and will probably appreciate you a lot more when you get home 😉
A month is not that long if it brings the results you want. Please try not to let it stress you out. because you want to be on top of your game when it actually happens.🌹
Thanks Elaine xx I am going to try and concentrate on all the reading I can get done when I’m away and, yes, hopefully they’ll appreciate me more after! xx
I don’t even know what to say. It’s a lot. I know that everyone will pull through, kids are resilient but we carry it heavy in our hearts. My daughter is much older and I never had a hospital visit until recently she was nervous and she’s an adult. I’m just thinking positive thoughts for your family and of course for you.
Thanks Jamie xx I know that it will be worth it, but I do worry about the kids. My friend who is a teacher said the school should be able to support them, so it is something I can talk about to them next week when they start back xx
That’s a great idea.
You are so brave to take that all on board and do that, I wish I had half the courage you clearly do. Good luck with it all and stay strong for those kids x x
Thank you so much Kim, that is so lovely for you to say xx
I honestly can’t imagine how challenging this is going to be for all of you, but I do know you are an incredibly strong woman! I will bet both of your children are strong like their mother and even though it will be difficult, y’all will make it through and be even stronger. My heart is with all of you and I wish there was more that I could do to help make this easier. Please know that my thoughts will remain with y’all during this stage of your life. All my love always Jenny!!
Thanks Alyssa, love back to ya! I am luckily going to take my laptop in with me so I can keep up with all the fab blogs out there and keep in contact with others 🙂 xx
I am so happy you are going to be able to have your laptop with you! Sweetie, we are all going to be here to support you through this time of life. I wish there was more I could do to help you, but I will continue sending you encouraging, loving and comforting vibes! All my love always Jenny!
My thoughts will be with you and your children. A month is a long time to be in hospital and in isolation! Like people who have organ transplants or leukemia. I’ll send you some colour ins to do while you’re in hospital and let me know if you want any songs recorded I can send to you to listen while your’e there too. I know how boring and exhausting being in hospital can be but thankfully there is this treatment available to you, unlike my conditions where there is almost no research.
Please let me know when you’re going to go into hospital to start treatment.
Sending you my love.
Thank you much. Yes, I am really lucky that there is a treatment option for me, most people with SPMS don’t have anything to help but I am a bit of an ‘anomoly’ with as I have some extra currently happening that will hopefully respond. Thank you so much for the colour in, I do follow your blog 🙂 . I will be updating mine through my treatment too xxx
I just have to figure out how I’ll attach them as pdfs or large jpgs to my blog you can print out and colour in.
I will post the colour ins on my blog. Not sure if you follow it or not yet. I can’t remember. I will miss your positivity of course. I don’t like to see photos of people in hospital, it makes me sad. 🙁
Awww Jen. My heart goes out to you all. Just so, so hard. Well done for breaking the news in such a positive way. It can’t have been easy, especially with your daughter being so upset 😢 That’s really tough. Thank goodness for Skype! You are going to miss them hugely, but you are so strong, and you have to remember you are doing it for the good of all of you and your future. They will all be fine, and the time will come and it will go. Thinking about you and sending much love xxx xxx
Thanks so much Emma 🙂 I am sure you are right and the time will go by quickly. A good chance for me to catch up with my reading I guess 😉 It’ll will hopefully take my mind off missing them xxx
Thanks so much Emma! I thought that I had replied to this but for some reason I can’t see it?! Anyway, you’re right and I really just need to concentrate on the benefit it will (hopefully) bring me. Kids are a lot stronger than we give hem credit for! xxx
My heart is with you all as you embark on this new journey. I’m really hoping this treatment works for you! I believe that kids are resilient and will be fine. Skype, FaceTime, and lots of love between now and then will fill them up with your love until you can get back to a more normal routine! Good luck and I look forward to hearing how it all goes! Xo
Thank you so much! I’m sure you’re right and the kids’ll be fine. It’ll be me who misses them loads!
Thank you so much! xx
I somehow missed you were going to do this treatment, what a brave decision Jenny. Of course you know rationally they will be fine with their dad, but emotionally, being a month away from your kids and husband must be so difficult. My thoughts are with you all!
Maybe you could FaceTime or Skype with them, write them a letter each week (in advance?) or prepare something a little special? My kids are much younger but they love little surprises.
Is there anything you or your family could do to keep their routines somewhat the same as usual? I find that’s always helpful for kids when there’s much going on in life.
And are there books for your daughter’s age that deal with this topic? Something that will help her mentally prepare and/or feel understood?
And please don’t forget yourself too! Make sure you make yourself comfortable too and bring enough entertainment to keep your mind positive too. Good luck Jenny!, and take care!!
Thanks so much Jennifer! Apologies for not replying sooner, I thought for sure that I had 🙁 . Yes, I completely agree with you regarding the ‘little surprises’. My daughter would definitely like that, maybe I can leave her something or set her little drawing challenges which she can then show me on Skype. I know it is the best thing and I am trying to think of the positives, like I should be able to read my book with few interruptions! I will definitely look for a book for the kids too, my husband can chat it though with them and maybe I can take pictures of where I am so they don’t have the ‘unknown’ of where I am.
Thanks so much for commenting 🙂 xx
Jen, I am reading this journey with great interest. I am about to switch my treatment to Lemtrada which is completely different than HSCT but in many ways somewhat similar. Sending you all the good vibes as you navigate this new journey with your family. -XO
Thanks so much Beth and sorry for the late reply – I have been a bit poorly recently so am a bit behind with replying to comments. Really hoping that your Lemtrada goes well too – is that the one that is a twice a year transfusion? Thank you for your good wishes! xx
No Lemtrada is a two time drug – the first infusions are 5 days then one year later you get three more days – and then hopefully nothing after that. Ocrevus is the twice a year one. I was on it but it did nothing for me so we’re switching things up. Never apologize for late replies! I’m happy to hear from you at all at a time when you’re doing poorly. Sending good vibes your way for better days ahead. ❤️
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