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............
Posts
45 comments:
OMG, I can't believe this has happened and they STILL don't know what he has!!! And don't be embarrased about sharing an incorrect diagnosis with us. We are taught to trust doctors so why would you think this diagnosis was wrong? I hope you get some conclusive news very soon x x x
WOW! Unbelievable! Saying sorry doesn't seem like enough; you guys deserve answers! I just don't know what else to say, except (as cliche as it sounds) hang in there! I hope answers come your way soon!!
What can i say. I just hope you will get an explanation soon. In the meantime... I hope you are still hanging in there. Wishing you the best.
You have nothing whatsoeer to be embarrassed about. And I just hope that when they finally do figure out what the diagnosis is, that it is one with the best possible outcome.
=)
How frustrating for you - I really hope they come up with something soon. Don't apologise for the wrong diagnosis - I am pretty sure your readers want to be kept informed along the way. Please keep sharing
Oh no! I am so sorry you still don't know what it going on, although very glad you may not have to deal with chemo and all of that. We will continue to keep you all in our prayers.
Gosh Jen, don't be embarrassed, everyone trusts doctors :) I'm so sorry this is happening to you; it must be so difficult not knowing. One of these days someone will turn around and know what it is immediately. We will all wait anxiously for that day with you. Much love and best wishes for you and all of your family xxx
Don't feel embarrassed, you're reflecting the difficulties of a very tough situation. I hope they can give you some positive answers very soon.
Don't you dare be embarrassed! If anyone should be, it's the doctors! They should have realised much sooner that it wasn't "because of the autism". Grr!
Really hope you get some answers soon. xxxx
Jen, my heart goes out to you and your family.
Don't dream of being embarrassed!
I'm really hoping you get some answers soon, hugs to you.
I think the hardest part is going back to the not knowing and the waiting. Do not apologise - we are here just as any friends would be. Listening, hoping, caring. Do not be embarrassed, that is what we are here for - unconditional support.
xx
Oh Jen, don't apologize! We are all here for you, and want to listen to anything you have to say, even if he gets a different diagnosis. Please try to stay strong. So many prayers and well wishes are being said for you, HRH, and your whole family!! HUGE HUGS to you!!
Jen, first off, get over the embarrassment. You were GIVEN these wrong diagnoses and had to live with them. Please share them with us, we want to be with you every step of the way. If you get 10 more wrong diagnoses, we want to know about all 10.
We are not here for neat little stories tied up with a bow. We are here to support you, to be with you on your journey, and how can we do that if we don't know what is going on? Tell, share, and let us travel this road along with you.
It must be beyond frustrating for everyone involved that this looks and acts like these diseases, and yet isn't. Medical mysteries are interesting on TV shows like House, but in real life? Suck big time.
I hope that you get answers soon, but please keep sharing all the bumps along the way. We are here with you.
Don't be sorry Jen. I just hope you get to the bottom of it very soon. So frustrating and disheartening for you,x
(((())) I keep you and your family close to my heart and in my thoughts. You are not alone; there's lots of love being sent your way.
I hope they figure out what's going on and how to help him soon.
Keeping your family in my prayers.
Barbara
Seriously Jen, are you really apologizing to us over a misdiagnosis??? All we care is that you keep us posted!
I honestly can't believe the doctors are so baffled. It blows my mind.
And your attitude is amazing. I know that deep down you truly know HRH will be OK, and I am sure he sense that. It probably keeps him strong. You are the best mama ever.
Love the picture by the way. Good to have a laugh right?
What??? You mean I became an expert in Google researching Langerhans Cell Histiocytosis for nothing??? Seriously, what Varda and Jean said...keep us abreast of all the news that you can. Thinking of you and HRH every day xoxoxo
What a crazy and scary roller coaster for you and your family. Please don't apologize for sharing what you thought to be true. That's what we're all here for. My heart and prayers go out to you and your family.
You have nothing to feel sorry about! I feel bad about what you're going through. Since they know that he has abnormal cells growing in the bones, shouldn't they start a course of chemo even if they don't know exactly what the cause is?
I hope they have the correct diagnosis soon!
Oh, Jen. There's no need to apologize. Those of us in the medical trenches know all too well that diagnoses and prognoses are more often than not ambiguous and uncertain. Hang in there and keep us posted. We're thinking about you and your family, wishing you all the best.
Don't apologise sweetie, you are just keeping us up to date with as much as you know and that is all you can do. I pray this is a turn for the positive and they can get a firm dagnosis for HRH very soon.
Praying for you all, Mich x
What a roller coaster of emotions you have been through. And you don't need to apologize a bit. I am glad that you are sharing all that is happening along this difficult journey and this is one more piece of it. Sending you a million hugs.
If they send you abroad tell them you prefer Michigan. :)
Don't apologize for anything. It's not your falut the medical community has their fist up their....uggghh.
You poor thing. I can only offer my words and hugs from afar. I'm thinking of you.
Don't apologize! How were you to know they made a mistake? I am so glad that it's not that Lagerhorn thing, and I'm praying they not only figure out what it is soon, but that it will be curable.
And please do keep us updated!
Oh man. I am sorry to hear you are still struggling to find a diagnosis. I hope you get one soon so you can work on treatment and rehabilitation. Hang in there and if you ever need a shoulder, you know where to find me.
Oh man...what a nightmare you are going through. Good to hear it isn't LCH, but geez...the tumor board sounds scary.
There's a show here in the states called "House" (about a jerk doctor who can diagnose even the toughest anomalies). Sounds like you need someone like him. I know it sounds redundant Jen, but DO hang in there...and know that we are all sending good, loving energy your way!
Don't apologize! I'm so sorry that you still don't know. Do you have someone to help out while you're dealing with this? I hope so. Big tight hugs.
Don't worry about sharing an incorrect diagnosis with us. It reflects the agonizing process your family is going through and the pain of uncertainty. I hope you get the right diagnosis soon. I can't imagine your frustration with this situation right now. Thank you for keeping us posted.
Oh! You SO shouldn't be embarrassed. (((hugs))) I'll continue praying for your wonderful family Jen.
Bloody doctors - I'm sorry that they have not given you the right diagnosis. I hope for all of you that they can work out soon what HRH has got.
Thoughts and love to you all
BNM
I agree with Varda..share with us whenever you feel like it. You and HRH are on all of our minds day and night. I do hope you get answers soon so that your gorgeous little sweetheart can get the treatment he needs :-)
And YES.... onwards and upwards. But be aware that you have a huge following behind you ;-)
((xx)) Jazzy
You Are Embarrassed? Girl. give Yourself a Break!! You have done everything you possibly could xxooxx
Don't apologize! That's your day-to-day and we're happy to share those burdens with you. We'll better know how to pray for you and your family (which we're doing lots and lots). Hugs!
It's good news that it isn't that but what a nightmare back to not knowing. It does sound like they are trying though. More love winging it's way x
Oh Jen I am so happy to learn that HRH does not have cancer, what a great relief! But then you are back to not knowing which has got to be so very frustrating for you and it breaks my heart that you are going through so much...you and HRH.
I am so sorry that I have not been around for you lately but so much has been going on in my life that I haven't even been on the computer to even check my e-mail, I check it from my phone now. I hate that I have missed your news but I will do my best to keep updated on what is going on with HRH because I do care about you both.
Big Hugs!
(((((hugs)))))
The waiting and not knowing must be the worst! Hoping that they get some answers for you soon, and find a way to make your little one better.
What a rollercoaster ride this all must be. Just know that you and your family are still in our thoughts an prayers. Many hugs and hang in there.
So sorry Jen to hear you guys still are in a place of not knowing what is wrong with your wee fella.
I know the whole hospital thing is really hard, you have no control and not knowing makes that so much harder.
Trying to manage family life, look after HRH and deal with the hospital is an awful lot to have to do, I would guess you can get a bit lost sometimes yourself in there so try to do something for yourself every so often if you can.
OMG I dont know what to say
I researched LSH like crazy here
Many hugs - I am grateful its not this
Just caught up on this new update Jen and wanted to send you a MASSIVE virtual hug x
Don't be embarrassed Jen, you believed the professionals and have nothing to apologise for! Still storming the heavens for that gorgeous little man of yours, hugs winging their way to you all xxx
Seriously, what are these doctors doing to you?! You poor thing. Thank you so much for keeping us updated, we're all with you. Let us know if we can do anything.
Jen, I am so sorry that you still have no answers - I really hope the doctors can tell you very soon what the correct diagnosis is. I cannot begin to imagine the stress, worry and upset that you are going through ... I only hope it eases up soon for all of you.
Post a Comment
Lovely to hear from you.