The awkward moment..........

..........when HRHs' consultant says 'he doesn't have Langerhans Cell Histiocytosis, the test came back negative' after a whole week believing that he had, when they told us this is what he had! I can't be cross though, they did say it was preliminary and we took it with a sigh of relief because knowing was so much better then not knowing. Still, they were confident.

A week of researching, planning for chemotherapy and just getting our heads around the enormity of what he would be going through. The thing is that I can't let this knowledge and information go yet because they do think he has something along those lines but..........

They don't know what he has, not a clue! His medical case went up before the Tumour Board (comforting name, eh??!!) yesterday and they had no further suggestions. It has also been forwarded to a team of experts in the USA and put up on a global medical website to get opinions and still no suggestions..........yet. All they know at the moment is that he has abnormal cells in his bones and they will keep going until they find out exactly what is happening to my little sweetheart. There have even discussed sending us to another hospital abroad, but not yet.

Thanks to everyone for the lovely comments, emails and support over the last few weeks. It is lovely and I look forward to opening my emails each day knowing that lovely, kind emails will be waiting.

Back to not knowing but onwards and upwards, right?







       


PS, I am horribly embarrassed that I shared an incorrect diagnosis with you. I will be more careful in the future. They were so sure this is what he had, but then again, they were 95% sure he had Leukaemia two weeks prior to that and he didn't. I think I will just have to wait until I see an actual piece of paper in front of me before I say anything again! Sorry............

Blog Gems & HRH update.

My blogging BFF Jean at Mommy to Two Boys is hosting Blog Gems this week. Rather than let the linky love die out I am going to farm it out for a while and share the love. If you are interesting in hosting please leave a note in the comments and I will contact you with a date. The linky runs every fortnight (used especially for Lynn) and I have Blue Sky lined up for the next one.

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.





     

Taking a new direction

HRH had a bone marrow biopsy last Monday. The test came back negative for leukemia.

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!

       

Blog gems - Air your Archives #13

Button HTML

<div class="separator" style="clear: both; text-align: center;"><a href="http://www.thekingandeye.com/p/blog-gems.html" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/_lOsoshgflBM/TMRNCw-tftI/AAAAAAAABBw/30Aa1ACksJA/s1600/Diamond1WMK.jpg" /></a></div>

How many posts do you have languishing in your archives? Great posts that will never be dusted off and brought out to breathe again! Maybe you created fabulous content before you had lots of followers, or maybe you have been blogging for years and your current followers haven't seen your older material.

I have a plan.

Blog Gems - Air Your Archives is a forthnighly linky list where I will give a prompt and you select a post from your archives that fits the prompt. You do not have to create content for the prompt, unless you want to. All you have to do is copy and paste the url of the post into the linky list. Voila, an old post gets a second shot!

To take part:

1. Follow my blog to get future Blog Gem posting information and linkys.

2. Grab the Blog Gem button and place it on your sidebar (html code here or above)

Putting the button on your blog is not a dealbreaker, some people just don't like doing it and I have no problem with that at all. What I will say is that something like this can't be successful without 'word of mouth' so I would appreciate if you could find another way to let people know that this is available and they are welcome to join in.

3. Enter your link.

4. Read and comment on the submissions of the two blogs posted before you on the linky list. (Please!)

5. Help me spread the word by telling your blogging friends, either by tweeting this or blogging about your entry.

It was Mothers Day on this side of the world last Sunday. Link up a post about parenting, being a mother or a father. If you are not a parent just pick a post about your own parents, if you have written one.


Broad interpretations of the prompt are encouraged so this could be a good chance to be creative!




For any newer bloggers don't worry if you have to link up posts that you have linked up before, it is very unlikely that you will end up with the same readers as last time so continue to join in and have fun. Many, many thanks to those of you that blog about Blog Gems, I really appreciate the links and help getting the meme 'out there'.




     


Allison at Life in a Pink Fibro and I have gotten together to generate some cross-hemisphere linky love. Allison runs Weekend Rewind every weekend and is also based on posting up your favourite oldies. It is one of the friendliest bloghops I have ever taken part in! Her linky is closed now, but will be open again next weekend. Remember to go have a look!

Michelle at Mummy from the Heart has started a lovely new meme called Reasons to be Cheerful, have a look.

Quick update on HRH. Something showed up in his MRI on Friday and he will have a bone marrow biopsy tomorrow morning. Wish us luck!

Ramblings of the marginally demented (thats me!)

Day 8 in hospital and HRH is getting used to it now. He will have an MRI on his hip tomorrow and I really hope this gives us answers. I was shocked yesterday to see the muscle atrophy in his legs, in particular his left leg (his left hip seems to be the problem). Both his legs are considerably thinner, but his left leg looks like a match stick, with his knee being the head of the match! Even if we get some idea of the problem tomorrow we still have a long road ahead of us as he will need intensive physio and assistance to build up his muscles and walk again.

HRH has been given cream for his skin as his excema started to flare up a little with the heat of the hospital. It is very good cream apparently and has urea in it. So my burning question is..........where do they get the urea from? Is it synthesised, animal or human. Do staff in the factory have to donate their pee and is it in their contract to so so? (being on site and all)

A very tired and marginally demented





       

Medium sized rant warning!

HRH was admitted to hospital on Thursday after our clinic appointment with the 'gentleman'. To be fair the 'gentleman' was, in fact, a true gentleman. I didn't have any fight to get him to believe me, he could see just how much HRH has deteriorated in the last month. He was also very respectful of HRH and didn't push the examination too far but tried to judge it on HRH's reactions every time he put his hand near HRH's left leg. (imagine the screaming yourself).

The Rheumatologist never came on Friday but should do so on Monday. It looks like he has a bigger problem than was initially thought (really??!! should have listened to his mother) and Arthritis has been bandied about a bit. I have to say, I resent that he could have something like this, I think autism is enough for him to deal with.

But, really, I think my problem here is that I miss my happy little boy sooooo much. He is in a lot of pain, all the time. He is unable to sit for more than a few mins, and even then he can't do that until about 40 mins after he gets his pain meds. His social interaction with his siblings is non-existent, he rarely speaks anymore, or laughs for that matter. He has several big sores on his face where he keeps digging his nails into himself and cutting himself and keeps going back to dig out more skin. He ate two biscuits and a packet of chocolate buttons yesterday, about average for him now. Some days he won't eat at all, nothing! He has lost a lot of weight.

I am stunned at the effect this issue is having on his quality of life. I expect we will be in hospital for most of next week while they do more tests. Poor fella is distraught being back there. He screams when I put him on the bed because bad things happen on the bed, examinations, blood being drawn, that kind of thing.

It is two months since he started limping, 6 weeks since he last walked. I am going to camp out at the hospital and refuse to leave until we have answers. They will have to arrest me to get me to leave! This has gone too far and it shouldn't have taken this long for them to listen to me and recognize his pain.

Fed up.......much?