#LangerhansCellHistiocytosis

MOST RECENT

Thanks everyone for continuously praying and supporting #camdenslchjourney !! How can you help:
gofundme.com/Camdenslchjourney

Whether it’s $5,10,15 anything helps and once again thank for supporting and being a blessing to Camden!

#langerhanscellhistiocytosis
#histioawareness
#momblogger
#gofundmecampaign
#raiseawareness
#momofboys

Thanks everyone for continuously praying and supporting #camdenslchjourney !! How can you help:
gofundme.com/Camdenslchjourney

Whether it’s $5,10,15 anything helps and once again thank for supporting and being a blessing to Camden!

#langerhanscellhistiocytosis
#histioawareness
#momblogger
#gofundmecampaign
#raiseawareness
#momofboys
#welivebabyyeah

We’ve had a great weekend break courtesy of @hopeforholly.co.uk who let us stay in their fab caravan on the @ribbyhallvillage site. ...
Jack could join in on all activities, which was just so lovely for him and us. We went on a boat, he had a go on the climbing wall, swam and went on all the slides, archery (we were all a bit rubbish at it though!), made friends with some little ducklings, nature trail, football, zip-wire and day in a brand new RED Porsche 😍❤️
....
When he was first diagnosed I was reluctant to accept this sort of treat from charities and other organisations. Maybe it made it all too real? The reality is that I’ve been inspired by what Holly’s parents have done. We have some plans taking shape already but experiencing the kindness of another Oncology family first hand has just added fuel to the fire and sured up my determination to give something back to others who need it in the future. Pay it forward if you will.
....
Truly wonderful memories have been made, really grateful to have been given the opportunity to make them.
...
#histiowarrior #langerhanscellhistiocytosis #oncology #hopeforholly #ribbyhall #memories #gratitude

| We are up and dancing to @forkingandcountry to joy. We will be going live on FB fb.me\camdenslchjourney at 5:00 pm to answer questions about #camdenslchjourney and for friends and family wanting to see him.|
#wearegoinglive
#forkingandcountry
#joy
#weredancing
#raiseawareness
#histioawareness
#lchmultisystem
#langerhanscellhistiocytosis

Took this little face to the circus yesterday. She wanted a trip to dores after so off to dores we went, she loves when we go over the bumps as she gets a wiggly tummy. The first one we got to I turned and asked if she was ready.....I seen this. Out of nowhere she was fast asleep. We got to Dores and parked up where I let her snooze a little more till she was ready and when she came round she was just as she was before. Bright and breezy! She is just utterly incredible. I have he audacity to complain about being tired all the time, and here she is. With all those drugs pumping through her body not complaining, not once. She is an inspiring, strong, amazing little person. I will forever be in awe at just how much she has powered through her journey. Cancer hasn’t got a look in where this warrior is concerned. She is fighting back hard and strong. ✨💛 #fuckyoucancer #lch #langerhanscellhistiocytosis

Camden “YAY” and thanks to everyone that has been supporting him in each and every way they can. To help him reach his goal.We surely do appreciate you guys. And remember anything helps make your way over and donate and help #Camdenslchjourney!

Copy and paste the link ➡️gofundme.com/Camdenslchjourney

#Youguysrock
#Thankyou
#histioawareness
#Camdenslchjourney
#gofundmecampaign
#Helpmereachmygoal
#Lch
#langerhanscellhistiocytosis

We have had an extremely rough week of Cooper not sleeping at all during the night, not more then an hour at a time. We are treating his skin with Motrin as I said in our last post not to get him to sleep, but to hopefully get the lesions that are painful to disappear bc of the inflammatory properties, he will be on Motrin minimum of 1 year. I took this sweet picture of him passed out mid-dinner tonight, & hopefully the worst of the sleep deprivation is behind us. We are thankful for an oncologist who uses the minimum treatment possible but also is vigilant of the surprises this disease loves to offer. We are also thankful he still is “skin only.” Let’s hope we can make it until October for another visit 🤞❤️ #lch #langerhans #langerhanscellhistiocytosis #histiocytosis

This sweet Coopster measured in at 19.4 lbs today @ his oncologist appointment! He unfortunately has new skin lesions that we are treating with nightly Motrin (anti-inflammatory) but also means we can expect them somewhere else (probably bone) @ sometime. The hardest part of these appointments is no one can give us any definite answers of when/where/why because the disease is so rare. Until something changes we will celebrate his crawling/attempting to climb stairs (🙄) & appreciate/ worry about the lack of sleep with his new nightly wakings. 😴👶🏼❤️ #lch #langerhanscellhistiocytosis #langerhans #lchwarrior #histiocytosis #theygrowsofast #ihavemyhandsfull

When the youngest sibling is battling cancer demon and older siblings come to support during a chemotherapy day. We cry and laugh together. #bestsiblings #cancersucks #screwcancer #siblinglove #langerhanscellhistiocytosis #lovemykids

It’s been a bumpy few months. The last couple of weeks though I feel we have turned a corner. Maybe because the end of the intensive chemo schedule is near.
...
One thing that we’ve done differently this time is making sure Jack has gone to school as often as possible. When he was first diagnosed he was in he nursery half the week and the other half with his childminder Dawn. We felt safer with him at home or at Dawn’s and so he missed the whole of the first term. ....
Lots has changed for Jack in the last 12 months. We moved to a new area, he got a little sister and he moved schools. Then half way through the year he relapsed. He could be forgiven for complaining if he ever did, but that’s not Jack.
....
We got his report last week and it said he had missed about 25% of the year. Not a ridiculous amount but possibly enough to have effected his work. Not our boy though. He is performing were he should be, and actually excelling in his maths (a year ago he said he was going to smash maths in his new school according to my Facebook memories.....thoughts become things).
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We are so unbelievably grateful to the staff at Liscard Primary who have been nothing short of BLOODY MARVELLOUS. From Jackie on reception, the dinner ladies (My Mum 😬) to Mr Maldon in PE to all the teaching staff in Year 2.... especially Mrs Sharp & Keast & Mrs Swindells and the parents & children who we have become friends with. His first year has been a dream, all things considered. ...
One more week left of term and he will miss the last two days due to chemo. ...
His vision last year was to excel in Maths& Science..... NASA, he’s coming for you next 🚀💙😬 #nasa #langerhanscellhistiocytosis #histiowarrior #cancerblogger #positivevibes #liscardprimary #mindset #teacher

We are here we are doing are check up with Camden’s doctor and just got accessed through our port.We will let friends and family know what room we are in once we get to our room. ( And of course you know we had to get BUBBLES!) Go find us on FB!
#histioawareness
#langerhanscellhistiocytosis
#lchmultisystem
#camdenslchjourney
#raiseawareness
#bubblesarefun
#momblogger
#momofboys

Just got confirmation that we will be admitted tomorrow AM for another round of Chemotherapy.This will be for five days.This is the second chemo that we were on. From previous admission now that we are getting little to not as much symptoms. The doctor in Houston wants us to try the chemo which is through his IV again. So we are hoping for different results this time!

Please keep us in your prayers. And thank you to everyone for continuous support ! You can continue to follow Camden’s page for updates @camdenslchjourney on FB.
Also please copy/past/share and donate to the following link listed below:

https://www.gofundme.com/Camdenslchjourney

#camdenslchjourney
#Histioawareness
#langerhanscellhistiocytosis
#lchmultisystem
#momblogger
#raiseawareness

**TAKE OVER ALERT**
....
Hi everyone, this is Jack! My Mum has let me take over her social media pages to tell you all about an exciting event I am taking part in with my school friends and teachers next week.
...
If you know any kids, the chances are you have seen them do this dance before. If you haven’t, check it out in YouTube, it’s called ‘The Floss’
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Me and my friends in school are obsessed with it so my teachers came up with an idea to do a ‘flossathon’ (partly to try and knacker us all out for the end of term) but mainly to help raise some money for ‘The Jack Daley Histio Fund’ which my Mum & Dad set up with a little charity called HistioUK. They will use the money we raise to fund research in to the disease that I am currently being treated for (for the second time!!). ....
If you would like to support me and my school friends you can do so by following the link to our JustGiving Page (in the comments) section.
...
And if you’re feeling extra wacky you can also post a video of yourself/your kids doing the floss and tag my Mum’s Page in with #jackdaleyhistiofund #flossathon #flosslikeaboss
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Thank you for all the support you have shown to my family and me so far.
#langerhanscellhistiocytosis #histiowarrior #oncology #liscardprimary #alderhey

Tänk att vår lille danskille blir 1,5 år idag ♥️ Efter en veckas förkylning efter senaste behandling och värden som blivit sämre (antagligen av alla hans cellgifter) fick Walter bli inlagd idag. Trots feber, snor och hosta så mår han ändå oerhört bra men läkarna vill ha koll på honom och eventuellt sätta in intravenös antibiotika.. igen. Det går inte en dag utan att jag tänker på hur lyckligt lottade vi är som får ha kvar Walter i vårt liv. Att från att ha varit så väldigt sjuk och sängliggande under många månader till detta 👆🏻 ett barn som går, springer, pratar. Jag älskar det, jag älskar denna lilla killen så mycket att orden inte räcker till, jag blir alldeles varm så fort jag ser hans lilla leende, när han springer och kramar en, dansar omkring här hemma, ger slängkyssar när besök åker hem, busar och är bara... alldeles, alldeles fantastisk... #hejawalter #fuckcancer #langerhanscellhistiocytosis

Let me introduce you to the most badass girl I've ever met!💪❤️❤️❤️ #fuckofflch #lchisbackagain #sheisgonnalkicklchagain #langerhanscellhistiocytosis #beawareofchildhoodcancer #canımıniçigüneşkaryam #bff

| Being a mom of two is a joy and a blessing.But since Camden was diagnosed with Langerhans Cell Histiocytosis. It has been quite a ride sometimes. I feel my oldest may feel left out. And the way he acts out and cries for attention. I’m trying to learn how to balance things out. Whether that’s going outside playing baseball with Aiden. Or when we have appointments at Cooks Children. Finding things for him to get involved in around the hospital. It’s nice to have nurses that get involved as well and caring doctors. Thankful for them but also the friends and family support as well. It’s like that saying “It takes a village to raise a child.”Having both the boys together is challenging but I’m learning and we are making it work the best we can. When one child is diagnosed doesn’t mean we forget about the other siblings. Everyone is affected when a family member is diagnosed.|
@camdenslchjourney
#thereislifeafterdiagnosis
#langerhanscellhistiocytosis
#Diseaseawareness
#siblingsmatterto
#Brothersforever
#lch
#Bigbrother
#momblogger

Just got a call from Son’s #oncologist that the last scan came back clear for LCH too! #bestnews #sighofrelief 🙌 We’re back to monitoring as ‘normal’ and every 6 weeks a port flush.😀👌 #langerhanscellhistiocytosis #diabetesinsipidus #childhoodcancer #parenting

The steroid/chemo cravings just get more and more specific by the day.
....
A plain omelette with pink Himalayan sea salt on (none of that budget saxo table salt here thank you) 😬🤷🏻‍♀️
...
Jack is feeling a bit better today but looks really pale with the black rings under his eyes that say he’s not had enough sleep this week. Hoping tonight will be a nice early night and a lie in tomorrow for him. He’s looking forward to seeing his sister who’s been on her holidays in Manchester for a few days to free us up to concentrate on Jack. ...
Only one more round of the awful cytarabine this week and then a 3 week break before the last cycle/scans. 🙌🏻👏🏻👍🏻 #alderhey #histiowarrior #langerhanscellhistiocytosis #kidsgetcancertoo #chemocravings #steroids #omelette #himalayansalt

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