Welcome to Ollysupdates

Ollys updates on his nuroblastoma journey 

Tuesday 30th june 

Nothing much too report so far all is fine getting his chemotherapy every 6 hours untill Friday he got a good night's sleep unlike me 😂

Been doing saw colouring and playing with some toys and he requested macdonalds for tea

2nd june

 

Well not much too report other than enjoying time at home 

Schedule for checks on 17th too see if he's well enough to go ahead on 28th june for high dose. Been told too enjoy 3 weeks leading up as would like ideally for olly too isolate to lessen the chances of picking any bugs up before high dose as it can worsen the side effects.

 

Friday 15th may

In for some bloods taken, weight and hight. Already smashing the gaining some weight back 💪 he was 16.7kg when we left and now sitting at 17.4 

In nice and early getting everything done and get us back home

Just been given a note that they going to try get us in for high dose on the 28th June instead of the 19th so means extra time 😁 & not as many scans needed between now and then 

Monday 11th may 

Well absolutely over the moon hard work has paid off 👏  and been told we can go home tommorow!

Just need to get his slow release gcsf injection done and we're set to go home 😁 & also cdiff negative! Thank God 

Already packing honestly cant wait to be home with both my boys 💙 

And have our own surroundings,  routine and bit normality back 😊

Saturday 9th may 

 

Well nurses want mr man too start being awake just before 8am so they can get a daily weight as he's been sleeping till 11.30am 

So tonight is day 1 of getting a routine back hopefully with being on his feet and using some energy by walking around the room gaining some strength 

Felt cruel waking him up and trying to keep him awake most the day but hopefully a proper routine he'll be back too his 6/7am wake up times. 

Bath time too try get his skin too improve faster 🙏 

Thors definitely being doing its job only a few ulcerations left in his mouth that I can see 

So hopefully its still definitely on the right route too getting home early 🤞

 

They've also sent off a poo sample off today so hopefully it'll come back cdiff negative 

Friday 8th may

So we've had ollys consultant in this evening 

Who's expressed that he's happy that ollys blood count is starting to return to normal and hes no longer concerned about olly getting something called vod 

He's pretty much planned that if I can get olly walking around the room abit after being off his feet for so long and get his feeds up and going again then we can talk about getting us home 😄

He said the skin might take a little while to resolve themselves and for his mouth to heal 

So hopefully we can just both get where we want to be which is home 🙌

 

We have taken advantage of the thor machine to help the process of his mouth which breaks down cells and help new healthy ones grow back so ive popped a lil photo of him doing that on. 

We have a plan now and hopefully this is onwards and upwards to getting back home and building him back up before the next round 

 

Recent update 

Saturday 2nd of may 

Well sorry not posted much but its been a few days.. these past few days have really been showing the intensive side too the Thiotepa.

But all things that have been expected and are being managed its not been pretty at all 😔

Ollys just been mostly sleeping these past few days he's got really bad mucositis his entire mouth is just white and he's had really bad sickness and dealing with some skin toxicity off the chemotherapy, had a few temperature peaks too but all expected. He vommited some blood yesterday but can be due to mucositis and everything being low so he's had a blood transfusion yesterday and he's had some platelets this morning and 3 days of gcsf injections to help boost his count up. 

Also on 3 lots of antibiotics as one for cdiff which has returned and one other bug thats going on can't quiet remember the name and one is just a standard antibiotic to prevent chick pox etc..  

 

So yeah its been a busy few days trying to keep my little man comfortable and comfort him best as i can and be by his side through the horroble effects hes getting. Hopefully they expecting him to start feeling better mid next week 🙏🤞 its been horrible and heartbreaking seeing him how he is its not like him at all.

 

Monday we had a visit with jack ♥️ just before all this really kicked in.

 

Create Your Own Website With Webador