We finally have a diagnosis for HRH. This is preliminary, but will be confirmed next week with further tests. Everything grinds to a halt in Ireland for the 4 day Easter weekend you see. Anyway he has Langerhans Cell Histiocytosis, a very very rare disease. Our Dr. said there are 50 cases in the UK but my husband has done some research and says there are 73 cases between Ireland and the UK. Regardless, this still fits with the statistics of 1 case per million people. Seriously..........it had to be my child! HRH already has it in his skin and his bones so will have chemotherapy and steroids. I assume he will be having further tests to see if it has travelled to any of his internal organs *sticks fingers in ears and sings lalalalalalalala* After I have flattened the Drs with every question I can think of, on Tuesday morning, I will know more, until then I am just guessing. The long Easter weekend is veeeery loooooong this year.
Meantime, in an effort not to get too carried away with stress, Firstborn and I had a lovely day out yesterday. It got a write up on Nintendo Scene and he got mentioned quite a bit, mostly because of his villianous 9 year old tendencies and Pokemon obsession! It was a great day out though and a lovely break from the madness.
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51 comments:
Hoping the time passes quickly for you, and that you manage to get some experts onto your case! Bet you'd like to go back and thump the so-calle professional who said he wasn't walking because of his autism... grrr. I'm angry for you. Anyhow big hugs x
I have no idea what to say as I am sure you are not feeling any particular relief now that it has a name, bit I am thinking of you and your family and hope that there is some light at the end of the tunnel now that you know what you are dealing with.
sending only good thoughts from across the pond to you. I'm glad that you and Firstborn had some quality time together - you both deserve it. Fingers, toes, and everything else crossed for your little boy. It's not fair. At all.
cool linked up already. xx much love xx
Oh, Jen. I am so scared for you and your beautiful child. I would be happy to host a Blog Gem for you; anything I can do to help!!! <3
((())) Keeping you and your lovely family in my thoughts.
Hope it all becomes clearer on Tuesday,sending hugs to you all and I am so glad you got some time away just for a break.
Praying, praying, praying for you all! I'm so so sorry that you are going through this. Sending lots and lots of hugs!
You stood up to all that doubted you and have saved your son more pain- you should be a proud mummy tiger - I'm proud to know you xx
I have been waiting for you to post with the results of this week's test. I hope you can find out lots more about this diagnosis on Tuesday and that the outlook is very good. Lots of love x x x
Jen, Well, at least it's an answer, and hopefully it has not spread to major organs. I am keeping all fingers and toes crossed for you around that. Of all times to have a four day holiday. I hope you get your next set of answers soon, and they are good news.
Oh, honey, anything you need you let us know.
And I would love to host a Blog Gems for you, one of these fortnights.
Lol @Varda, I should have said the fortnight thing for you too :) Will put @jillsmo and yourself down for a linky then:)#
@Hammie, well girl, hear me roar next week, I am going to insist that they do the necessary scans to check his vital organs given that he has been displaying symptoms for almost 3 months now. Maybe I won't have to roar, but if they don't do them then I will make sure they get done!!
Thanks everyone for your lovely thoughts, comments and emails over the last while. Really appreciate them.
J
Will keep on praying. You are such a solid woman, I have a massive admiration for you.
Mich x
Fuck, fuck, fuck, fuck....... Sorry I just don't know what else to say Jen. You will be in my thoughts and prayers and if there is anything I can do at all, please just say
So sorry to hear your news but glad you are able to have positive distractions too.
I love Blog Gems and would be happy to host if you need more people.
I hate to hear this. I want to take it away from you. I'm thinking of you and wishing you all the very very best
Stay strong. There is lot's of love from around the world with you.
Jen, brings tears to my eyes when reading your post. Very hard for you & your family. My thoughts & prayers are with you very day xx
Knowing is way better than not knowing. I am very pleased you have a diagnosis and now some proper work can begin in sorting it out. With it being so rare, unless there is one main specialist, my guess is you will be doing a lot of the pushing and running around the doctors for a while but you are already gaining experience in that. It feel like you are about to turn off the road of doubt and start along the main highway of healing. I wish all 4 of you lots of prayers, love and luck all the way xxx (happy to host a Blog Gems for you with a little advice on how xxx)
Sending you my love...
Huge sense of relief - the thing is NOT cancer, and HRH's prospects are very good since he is over 2 (yes, I read the attached article). He might get away with steroids (I loved them, they are like rocket fuel, not sure good news for the mammy though). And you didn't need to be told he is a one in a million! xxx
So glad to hear the update. Am off to read and research a little more, hope you don't mind.
Would also be happy to put my hand up for hosting Blog Gems.
Back for two reasons:
So glad to put faces to the names! Love the photos on the article Jen!
And also agree with Truf, it all sounds very hopeful for HRH. Far better than the alternative, big C.
xx
I truly am so sorry for the difficulties your family is facing, and now with this new diagnosis...
Lots of love and prayers are being sent your way. Try to keep your chin up.
So sorry to hear this diagnosis, it just isn't fair. So glad you got to enjoy some down time in the middle of the chaos with your eldest though, you both must have needed it.
Sending you the very best wishes, and waiting to hear what else we might do. Of course, count me in for a Blog Gems, if that helps.
Thinking of you and your one-in-a-million kid.
I feel relief that the guessing has stopped and send you courage and strength to carry on with what comes next.
Many blessings and much love sent your way, alllllllllllllll the way across the U.S. from the west coast to the east and then across the Atlantic.
I am so sorry for all that you are going through and can only hope that with a diagnosis comes treatment that will start to help HRH. I am sure this is so hard for you and I wish I weren't so far away so that I could do something.
I would be happy to host Blog Gems if that helps any.
Thinking of you and here if you need me.
Sending hugs and prayers your way. God bless you.
Jen,
I am so sorry to hear of this diagnosis and am praying that you will find answers and healing for your precious son.
Blessings,
Trish
Jen, I have a good friend whose son had Langerhan's. I know it was a tough road, but Ryan is doing fantastic now...he's 6. I'll get in touch with her (Irene) and link her up to your blog (BTW, she also has another little guy whose on the spectrum). I'm sure she could be really helpful if you have any questions. She's a super lady.
Hang in there Jen! We'll keep thinking about you and HRH.
Well, at least you know now and can do something to help your son. That's better than all the months of not knowing!
I hope the treatments go well and they blast the mother-fer bad cells out of HRH's body!
Hugs!
Thanks everyone, appreciate your kind words.
@Chris, it would be brilliant to chat with someone who has done this already if your friend had the time :)
Jen
Sorry to hear about your little boy's diagnosis and I hope the treatment goes well.
With best wishes. Deb
I must ask my hubby about this and see if he's ever come across it. No wonder it baffled the doctors for so long when it was so rare. Thank God they've diagnosed it now and can get cracking on the treatment.
Thinking of you all xx
Sorry to hear your news Jen but at least you know whta you are dealing with now.Parents always know their kids best.Thinking of you and your family you are in our thoughts and prayers
In tears Jen
Praying that he will heal and recover fully soon
Oh sweetheart. At least you know what you're dealing with now, eh? *hugs* xxx
Thinking of you.
Oh, what crappy, CRAPPY news. : ( We'll be thinking of you guys.
I am relieved that you have a diagnosis now and are being given the treatment options.
My son takes steroids for Landau Kleffner Spectrum issues and they also help with his systemic inflammatory condition of unknown origin....they can be very helpful with pain management issues of all sorts, is what I mean.
Thank you for keeping us posted. I imagine it must be hard to blog right now but just know that you have a lot of prayers and support here. Take care of you too.
I am so sorry about this! I have been thinking of you guys for weeks--ever since you suspected it might be more than arthritis. I wish I could help in some way. I'm praying for you and your family, even though my faith is not what it used to be. The prayers can't hurt, right?
I'd love to host the blog gems, even though I just barely started contributing....Let me know if you'd like me to.
Continuing to pray for HRH...
I'll host the Blog Gems whenever you need.
OMG, Jen. I pray that this goes well. I can't imagine what you must be going through. Thinking of you and yours.. XOXOXOX
So sorry to hear this and will keep both of you in my prayers.
Wow I'm blown away by this post. I have just found your blog via tots100 and so glad I did. I can't imagine what you must be going through and I hope you all can stay strong. I will be following ans so interested in how you all get on. Wishing you all the best for your journey.
Tracy at muminmeltdown.blogspot.com
Much much better to know, even though you wanted to put your fingers in your ears. I hope you can all stay strong and together to fight the next days ahead with love and hopefully some laughter along the way. Thinking of you xx
Oh my goodness, what a diagnosis. Hopefully now you can move forward and get HRH the treatment he needs. Keeping my fingers crossed for the next set of tests. Hugs,x
Thinking of you guys Jen xx Stick to Mama bear instincts you know your baby best after all xx Sending positive vibes to you all x
blumin heck thats rough! i send huge hugs and hope you are all ok as can be! xxxx
Jen
I've been away and not very good at leaving comments - I am so sorry to hear about HRH and hope that you both can nail this thing!
All my love
BNM
I'm new to your blog and saw your blog mentioned on Michelles site. I'm a stranger to you, but wanted to reach out to you as a mother. I hope everything turns out ok for you and your family. I can't begin to imagine what you are dealing with right now... Sending love xx
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