Sorry for the lack of updates.We were to busy enjoying our time with Caolan.Unfortunatley things took a very bad turn and today poor Caolan left this cruel world he passed away peacefully surrounded by all our family. He and we fought to we could no more.We are totally heartbroken but so proud of our wee man.Thank you for all the support and we please ask everyone to respect our privacy at this hard time. Sleep tight darling free from pain and suffering from now on
We have been quiet with updates on Caolan, as he wasn’t in good form . We had an emergency trip to Temple Street last Thursday. There has been fluid building in Caolan’s brain gradually getting worse but it got to the point that it needed to be treated.He was just off form not wanting to play or walk and by Friday not even talking but he had a fall and this is what we thought was causing him to be off balance and just not himself but a CT scan in Letterkenny showed this was what was causing him to be so unwell so we had an emergency trip by ambulance to Temple Street and the next day he had a VP shunt inserted that will drain the extra fluid. We were home again Saturday evening but it took a couple of days for him to come around but Thank God he is back to himself again. The fluid has been tested and there are no neuroblastoma cells in it so that is good news.Caolan’s consultant is off at the minute so we are waiting to talk to him next week to go through scans and determine what is next. We will also be talking with the doctor in America to discuss possible treatments. Thank you all for the continued support
Caolan went to his first football training yesterday at Little Kickers which has started in Stranorlar.He enjoyed it as he would cause he is football mad. We would like thank Damian Devaney for offering him a place. He told him he will be back so that was a good sign
Back from Dublin again,Caolan got his “freddie” fixed on Thursday in theatre.The chemo is still a struggle for him to take and by the end of the week he knows the score and nearly makes himself sick before he even takes it but what would you expect from a two year old. We met with Caolan’s consultant and he went through trials that are available, which isn’t much. The doctor in America agrees we do another cycle of chemo here and rescan and then we probably will be heading to America after that for more treatment.Caolan is in good form, apart from feeling a bit sick now and then.He is enjoying being able to get outside in the good weather. Thank you again for the continued support
We are in Dublin this week for another cycle of chemo.It was planned for Caolan to have his central line fixed today but then it was cancelled,it will be done at some point this week.He is in great form and all going well this week so far.We meet Caolan’s consultant on Thursday to go through everything and see what next plan is.
We got the results and scans are still good with no changes exactly what we want.Caolan’s “Freddie” which is his central line in his chest has moved slightly so he will need to go to theatre to either have it replaced or moved back in place.This will be a simple procedure he will get done next week.We are doing another cycle of chemo until we get another plan in place.We are meeting Caolan’s oncologist next week and he is going to go through the options that he has researched but he said there are very few. Thank you again to everyone who continues to support us
Caolan had a busy week of scans he was in good form all week but his hips were sore from getting bone marrow aspirates done but pain relief helped with that. We have to wait now until next week until the doctors have all the results gathered.
What is next? Well we are not sure as there is no set plan for us to follow,we have to make decisions ourselves of course we get advice from Caolan’s doctor,but it is not easy known what is best.
Here the only treatment plan is the chemo that Caolan is on and full cranial spinal radiation which means full radiation to Caolan still developing brain. This is something we are not willing to do as the long term effects would leave Caolan with the brain of a two year old.
So we are awaiting info back from America on other treatments that they have to offer that may benefit Caolan, although they still like the idea of radiation they don’t recommend it to an older age of three but ideally five!!
Life is very weird at the minute because we are leading two different lives.Caolan is in the best form he has ever been in,full of energy, growing and learning everyday. Then we are faced with the otherside making decision to help save his life. We have our trust in God that all is going to be just fine and we will make all the right decisions we have to make.
In terms of fundrasing we still need your help, we have funds to settle the bill but any new treatment in America is going to cost money we are going strong and will have enough to start but any plan will last at least two years so we need enough to see it through. If you have any ideas or would like to hold a fundraiser please contact Zoe 086 3226848 or Michelle 087 6150352.
As always we truly appreciate everyones support and thank you all for helping us give Caolan this chance cause one thing for sure he deserves it.
We are in Crumlin this week for Caolan’s reassesment.He has just went down for CT scan and MRI of his spine and brain.Tomorrow he goes to theatre to have his bone marrow checked and then MIBG scan that shows up any neuroblastoma.
One thing for sure holding him to get put to sleep does not get easier it is even harder now when he saying ‘no mammy no.’ But he is a strong wee man and no doubt he will be bouncing about later again.
Chemo is on hold to all scans results are back and in the mean time Caolan’s doctor in America is putting a plan together that she thinks will benefit Caolan.
Another cycle done, Caolan was in great form all week apart from yesterday he vomitted the chemo but he was just in a bad mood,when we got home he was back to himself.He gained nearly 1kg since we were up two weeks ago.He is one mighty strong wee man nothing is gonna stop him.He is growing and getting stronger every day thank God
Back in Dublin this week for Caolan 6th cycle of chemo.He is in great form.We will have full scans at the end of Feburary.It is then up to us to decide what happens next.But for now we will get through the week.Thank you all for the continued support