Welcome to Ollysupdates
Ollys updates on his nuroblastoma journey
23rd August
Been few days since i posted last,
olly is slowly but surely recovering from the vod and starting to become himself a little more day by day 🙏 still unsure of a go home day but just to update that things are improving a little day by day and hopefully we can get back home soon.
So I know i usually post hospital updates on page as we are getting treatments and are in hospital but this update is a little different and hard and needed some time ....
We done the routine scans after olly completed his 2 high dose chemos as usual and were needed to decide to go to Manchester for proton beam therapy on Thursday when we left to go home ollys consultant informed us some bad news that ollys lymth node site has basically resisted the high dose chemos and has sadly grew slightly in size., as too why we dont know yet we were booked in for a biopsy to understand why on monday gone but olly then got admitted back in hospital with a side effect from high dose called vod and cdiff so was unwell to do the biopsy and untill so we cant understand why, hes currently slowly responding well too the treatment is regaurds to the vod at the moment.
His consultant was concerned that with him needing more platelets that it had returned to his bonemarrow which is a little light that I can share on the situation is not the case.
All I can say for plans ahead instead of just treating his stomach with radiotherapy they are now looking at treating the lymth node area too untill we get the biopsy to understand why his lymth node has resisted the high dose.
5th August
Well one function test done and his mibg is complete, bonemarrow sample tommorow and hopefully we should be going home finally afterwards 😀
Tuesday 28th July
So had a meeting with radiotherapy guy from freeman's today, and he is happy to put in a application in for proton beam therapy too the panel which is great one hurdle crossed now just have to hope the panel agree 🙏
Thursday 23rd July
Well we have too room isolate as olly has adenovirus which has explained why hes having trouble hearing at the moment and has seemed rather sleepy lately,
But other than trying to get passed this hes all good his blood count and platelets are all normal now, he still in window for watching for vod complications but hopefully we can be on a route to getting home slightly early 🤞
19th July
Heading into the 4th week here now little man is doing okay all his blood count is getting good again mostly just chill and resting at moment keeping a close eye on signs of vod
Hopefully focusing on building his feeds back up and getting him back on his feet and hopefully with abit luck we can get home bit earlier 🙏
He's also happy he has a full set of squishys thanks too the lovely shop staff
Sunday 12th July
Been a weekend, olly had a blood transfusion on friday as his blood counts had dropped, and weekend has been the start of the temperatures last night he started the antibiotics and ended up needing a platelet transfusion at 2am. Sleeping schedule is all over for us both at the moment.
But considering he's been alot less worse than the Thiotepa so far. He has had some sickness but no where near as bad as last time and the mucositis isn't anywhere near as bad as last time too.
Thursday 9 th July
Not much too report everything is chill at moment he got his stem cells back on monday morning and now its just waiting for temperatures to peak hes yo yoing abit up and down but not enough for antibiotics yet
He's had bit upset tummy yesterday and today.
Other than that he's chill and sleepy but still well we had a couple games of jenga today and a stich game and his little face lit up when the woman in the shop (well the full shop staff) tracked him a glitter mini dumpling down from there delivery today proper lit his little face right up 😊
They even found one for jack
Saturday 4th July
All chemos now finished had his melphalan today which required giving his mouth brain freeze and cant be prouder that he managed the full time he needed to do it aswell.
He's now mega minted with roblox for a job well done,
Few chill calm days before stem cells get given back and then the side effects start to kick in.
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.
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