However there is a BUT........last Friday our Doctors were 95% sure that he does have leukemia so they are going to repeat the procedure on Monday. we have been told that the negative is good new and we can relax a bit, but not to be surprised if they confirm leukemia next week.
I never saw this coming, not even a hint of it. I look back now at being cross that he might have arthritis, and how unfair that would be on top of his autism. If the doctors mentioned arthritis now I would probably hug them, but that isn't going to happen. The best we can hope for at this stage is that he has some kind of systemic infection that has entered his bones and can be treated with a blast of high octane anti-biotics.
I am considering taking a break from blogging for a bit. My concentration is very poor, I find myself reading my friends posts and not knowing what it was about when I get to the end. I am very conscious that blogging is give and take, I have not been doing much giving recently. That doesn't sit well with me. I promise, I will post up what his final diagnosis is, I won't leave you wondering.
Thank you all so much for your kind words and support over the last 2 months, they have made such a difference.
any spelling mistakes are due to my iPad and it's silly spellcheck, please excuse them. It tried to change anti-biotics to antibooties!
My twitter handle is @irishautism, maybe I will run into you there, that would be great!
Posts
64 comments:
Oh Jen, I'm so sorry this is happening to your lovely family. I'll continue to hold you in my thoughts and HRH too.
Look after yourself, tons of love xxxxxxx
Aw Jen, I wish I could just throw my arms around you and give you a massive hug. I can't believe how long this has been going on for you and I'm always watching, waiting for your next post on HRH. I hope that it's not the worst news.
As for giving and taking, don't you worry about it. With things this important in life no one is going to care about you not giving.
I know I for one will miss your posts dearly.
Lots of love
Heather xx
OMG. And I have been sitting her stewing in my own mess and haven't emailed you in forever. Jenn, please forgive me.
I hope you will keep in touch. It has been so nice to have a real friend out there. I'm going to miss you so much on here and will continue checking everyday.
If you need anything, please... ANYTHING. Please let me know.
XOXOXOXOX
Heather, I might not be able to stop, I believe it is not that easy! We will see anyway, just not in good form these days. thanks Beth. Jen
Hate socks, don't worry girl, I know your email address! Jen
Thinking of you and yours and keeping you all in my thoughts; sending you well wishes. ((()))
Oh sweetie! I will definitely be thinking of you during this time...and sending positive thoughts your way. I wish that I could just send you a great, big hug!
Oh my gosh, I thought you were having a bad enough time of it as it was but this to deal with now must be awful. Sending you huge hugs because I really have been thinking about you all. I hope you can stay positive knowing that first test was negative x x x
Oh Jen. I'm so sorry. Please PLEASE take a break from blogging. We will always be here. Twitter and FB update when you can. Focus on that amazing family of yours. Nothing but good thoughts and prayers your way.
Alysia
I don't twit but will be here waiting for any news on your return.
I am so sorry to read this, and truly hope it is all a big stuff up and it comes back with something far less serious.
One of my closest friends has just been diagnosed with leukemia, so I know a little about what you may be facing.
My thoughts and prayers will be with you every day.
Jen, you don't need to worry about anything else except your family. My thoughts and prayers are with you, and when you're ready to return to the "blogosphere," we will all be here. Good luck to you and your precious family.
Oh Jen, I can't even imagine how hard all of this is for you. My thoughts are with you and your family. Blog or don't blog, no-one is going to judge you on that and you will know what feels right for you. Lots and lots of love, Lindsey xxxx
Oh effing nora, Jen :( Just yell if you want to chat - you know I understand xx
Sending you and yours lots of love xx
Oh my word! I can't believe how out of the loop I've been! I'm sorry you guys are dealing with this. We'll be remembering you in our prayers and I'll be following you on Twitter to keep up with whatever updates you have time to post. Sending lots of hugs across the ocean!!
Jen, So sorry to hear about this and of course you must be with your family. Sending you positive thoughts. Deb
Jen, NO!
Nononononononononooooooo! This is just. not. fair.
I hope it is something else, but if it is leukemia, please tell us what you need... do they let people donate bone marrow from overseas? If so I'll start a huge campaign to match your son if that's what he needs. Will you need funds for uncovered private treatments? Whatever, whenever you have a need, tell and we will broadcast it and get it met for you & your family. Sending love and hope and massive hugs.
Jen, all your friends are hoping and praying for good news next week. Don't want to be pestering you every day, but I'm here for you whenever you need a chat, a rant, a coffee or anything at all xxxxxx
Also? 2 things I forgot to mention...
First, very important... If it makes your life easier? Absolutely give up the blogging for now. BUT if sending out information to us via your blog and using it to get feelings off your chest is helpful? Please do keep writing.
TOTALLY FORGET the idea of "give and take" for now. We DO NOT expect you to be giving in this difficult time. You have been so generous, we know that is who you are. But this time now is about what you and your family need. We know that, we want you to have what you need.
NONE of us expect reciprocity from you in this time, so do NOT worry about that. Use this (YOUR blog space, to do with what you want), as a one-way channel for a while if that is helpful for you. We truly understand.
OK, that's what I wanted to make sure you knew.
And the other thing?
I want blood and flesh from every doctor / medical case manager who made you wait TWO BLOODY MONTHS to get to this point in the diagnosis of a VERY ILL CHILD that should have taken 2 WEEKS, TOPS!
Especially the toad who told you HRH wasn't walking because he was willfully resisting, who blamed it on autism? He should be made to literally EAT a copy the current medical reports. (I am maybe a little bit pissed off at this point, sorry)
Thinking of you very much and keeping my fingers crossed that a blast of antibiotics sorts things out. Don't worry at all about the 'give and take'. Everybody understands. Sending love and hugs,x
Don't worry about reciprocating blog-wise right now. I'm sure no one expects it. Maybe this could be a place to just kind of receive support for a time.
Hope that leukemia is NOT what's going on, but if it is, I'm sure a lot of people here will be praying for all of you. Me included (even if I am the new girl!).
Wordless and speechless. Sending you all my love and best wishes. Hope you will be back as soon as possible.
Sometimes it seems very hard to understand why things happen the way they do. I want to cry out 'not fair'. It is a lot to bare, lots of prayers for you and HRH. Xxx
Oh, wow. I am so, so, so sorry for what's happening now. I am praying you will somehow get really good news. Don't worry about reading other people's blogs--you need to take time for yourself. I wish there was something I could do!
Wishing you all the best, you'll be in my thoughts.
Huge, huge, HUGS to you Jen!! I will be thinking and praying for you, HRH, and your whole family!! Please don't worry about your blog but keep us updated as much as you can. Don't worry about keeping up with our blogs, we are here to support you now and that is all that matters! Love to you and yours!
Oh, Jen. I wish I could give you a big squeeze. No one would blame you for focusing on your son right now. We just care about you and HRH. Please keep us updated on how he's doing.
Praying that everything comes back OK.
Heart is breaking
you guys will be in my prayers every single day
Please update if you get a minute
thinking of you
Praying for a second negative result. And a blast of curative medicine. Love, Barbara
Oh my god, Jen!!! I don't know what to say. (((((((HUGE HUGS))))))))))
Jen: I'm so sorry!
Please keep us informed. I'll make sure to follow you on Twitter, if I'm not already.
A distant nephew of mine was diagnosed with leukemia a year ago. He responded very well to the treatments and is doing great! The chemo is grueling though. But leukemia is pretty treatable nowadays!
Hugs and prayers to you!
Jen, I am hoping that it isn't leukemia but within my extended family I know a little girl who completely recovered from it.
If there is anything I can do in the real world for you, please email me.
I understand the blogging dilemma, you may find it therapeutic for yourself though. Whatever you choose to do, take care of yourself and your lovely family. Bxx
Oh, I have tears in my eyes. I am so sorry this is going on -- we are all here for you, whenever, however. Blessings and prayers and strength and courage your way.
Oh Jen. I am so so so sorry. I haven't been a very good bloggy friend lately either and I feel so guilty. I really hope that the diagnosis comes back different. Giving you and HRH loads of virtual hugs. X
Oh my goodness. Hoping for that best case scenario, and thinking of you whatever happens. Please let me know if there is anything we can do. ((Hugs)).
Aww Jen, I'm thinking and praying for you and yours. I think Varda summed it up best--Do what's best for your family and we'll be here for support. Hugs.
Oh, Jen. I'm so sorry this is happening! Still praying so hard. I'm with Varda and all the others. Do what you need to do and we'll be here. ((((hugs)))
Oh good Lord, I have been away for a while and the last time we talked HRH was having some walking difficulties. There are a million things I want to say but nothing seems enough. Instead I am going now to light a candle for you all. You are in our prayers. All my love xxx
Jen... you take all the time you need. You need a break and you need to be able to look after HRH without ANY pressures. You know you have a team of people to help you through this...on all fronts :-)
I am so glad to hear about the negative result and I am praying that the next one will be negative too.
Chat soon hun,
(((xxx)))
Jen...OMG. We are so thinking of you and HRH and wish there was something we could do. Don't even THINK about the "giving" thing. Your son and family need you, and you need to take good care of yourself as well. I echo what folks have said above though...if it helps to just "vent" here, don't hesitate to pour your heart out!
Sending cyber hugs and prayers your way.
thinking of you darling girl
Jen, please , please please, look after yourself and your family first. To hell with blogging and things like that!
I've been in prayer for your lprecious little boy and for peace over your whole family. Xxxx
Know that you are treasured xx
Jen, you are in my thoughts and in my prayers.
OMG, Jen I am so so sorry, this is just shit, it really is. I have been thinking of you and HRH a lot lately and I am so shocked. If you don't want o blog, then don't, but is you need an outlet then write away, no one will get upset that you are not commenting or reading HRH and you are much more important
Oh Jen, I'm sorry, I can't believe this is happening to you.....thinking and praying for you and HRH.
Think about yourself and your family, they always come first, blogging can wait:)
xx
Jen,
Still praying and sending you love and hugs!
Oh darling, I really really REALLY hope it isn't leukaemia. I'm keeping *everything* crossed that it isn't.
And don't you dare apologise for not being around! I can't even imagine how exhausted with worry you must be. We are here for you sweetheart.
I'll be sending healing thoughts to your beautiful little man, and lots of love to you. xxx
Jen,
I tried to comment from my iPhone this morning, but it must not have gone through. I hate that you and HRH are going through such a difficult time. I am still praying and sending you love and hugs. Don't worry about the blog. We will all be here when you are able to return. Your family needs your now. Take care of that wonderful little boy.
Oh Jen, I am so sorry to hear of this. The agony and waiting must be terrible. I pray he does not have childhood Leukemia.
I do know that Leukemia is highly treatable in children. I know this from Manic Mother's blog, as she has a toddler who has recovered from it and she has written extensively on it:
http://www.manicmother.com/
Yes, take a break from blogging and as much as you can. My highest hopes and prayers are with you.
Suzanne
I'm so sorry to hear about what you're going through, I can understand a little bit of what you're going through as we've recently had a scare with my eight year old. I'll be thinking of you and your family and I have everything crossed for you x x
So very sorry to hear this and will be thinking of you. maybe it doesn't help to hear but if you do get the worst news know that the childhood leukemias are very curable these days. Still serious and scar and horrible, but most often curable.
As I wrote to you, there is no need to apologize for not giving or for giving up on blogging for a bit. Your family needs your full attention right now. But don't feel bad about posting your story and not visiting others. I think a lot of people will find comfort or awareness in your story. So write it all out, it might feel good. And do NOT feel the need to return the favor.
I love you Jen.
continued prayers
I am so very sorry. Isn't it just enough already? Enough misery for the universe to heap on your shoulders. I don't know you, personally, but think of you and your situation often, and am sending thoughts of support and positive outcomes your way.
I am thinking about you. I hope the latest biopsy was OK.
Oh Jen, I am thinking of you and HRH. You poor, lovely lady having to go through such awful uncertainty. If it helps to write about it then you should do so without feeling guilty about other blogs. That is so meaningless in comparison. I wish I could say something to make it better. Just praying for you and your family. xxxx
I am speechless. Sorry that I've been so out of the loop...I haven't been doing much blog reading lately myself but not for near as important reasons as you. I was just thinking the other day that I should touch base with Jean about how you are doing and then Big Daddy told me about this post. I'm thinking of you and your precious boy.
OMG Jen, I have been away on hols and just found this. I am so sorry. Will try and catch up on FB/ twitter tomorrow and see if there is any further news. Will be praying real hard for you all. Mich x
What you are all enduring is unimaginable to me. I can only offer my love and hope to you all. Massive positive thinking coming your way. And hugs.
xx
I am so sorry you and your family are going through this. I wish I was not a half a world away so I could do something to help.
You, HRH and your family will be in our prayers. I know it is sometimes impossible, but take care of yourself.
I am praying for your family. I'm sorry you all are having to go through this.
I dedicated my Rosary to you and HRH today.
Barbara
We are thinking of you here and sending you and your wonderful family our love.
Oh Mammy. Xxx
It must be a really difficult time for you! I really hope things work out for you all. Come back to blogging if & when you're ready. In the meantime we're keeping you in our thoughts & sending our love
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