Friday 12th April
Kasey managed to get home in February for a week to visit family & friends, it was a fantastic week & everyone was thrilled to see her. She loved playing with all her cousins & being the centre of attention! The plan for Kasey when she returned to Boston was to go into Stem Cell Treatment. Kasey had her MRI last week they wanted it done as we were planning to go into transplant soon, Unfortunately 3 tiny lesions showed up in Kaseys brain. They cant tell as they are so small but deep down Dr Susan Chi thinks its recurrences. As you can imagine we were gutted. The 2 main tumours are stable still which is good news.
The transplant team won't take Kasey on as they are afraid her cancer could be progressing and want to see is if her tumours are still responding to chemo. The next option now is for Kasey to start on a high dose chemo the beginning of next week. She will be admitted for 3 to 4 weeks roughly. Kasey has not had high dose chemo in a year so we are hoping her tumours respond and if they do she will go into the stem cell transplant. On the other hand if they dont respond the Dana Farber have a clinicial trial opening in 3 weeks for ATRT so this will be our other option. It really has been a rollercoaster ride for Kasey as she has had her ups and downs, ATRT is such an aggressive tumour that we dont know which way her MRI scans results will go and we are always so nervous for the results. We will keep going and will try our best for our little Princess and hope she fights this aggressive disease. keep kasey in your prayers for the next few tough weeks ahead. Thank you all again for all the wonderful support given to Kasey & our family.
Tuesday 15th January
Happy New Year to you all, thank you again for all your support to Kasey & our family during 2012. Well Kasey had a brilliant Christmas & got lots of lovely suprises off Santa Claus. She was over the moon to see her Nana & Uncles arrive into Boston to spend Christmas & the New Year together. Kasey also had a very special occasion, her 2nd birthday was the 31st December so there has been lots to celebrate.
Kasey has been doing so well that the Doctors were allowing her to fly home to Ireland so Mammy, Grandad & her could spend time with family & friends this week but Kasey spiked a high temperature last tuesday night so mammy and grandad had to bring Kasey into the hospital.
She was admitted due to low counts and an infection around her G tube site, but was soon back to herself and thriving after the fantastic care she got from all the amazing nurses and doctors, they are fantastic & they only adore her chubby little face.
Kasey had to go into day surgery today to get a temporary pick line in her arm as they cant place a Hickman in her chest due to a blood clot in her heart, Mammy has to give her a needle twice a day in the leg till the blood clot is gone. She also got chemo through her little spine today, she is a trooper for such a little person.
She amazes us all with her strength, she always bounces back and is looking the best we have ever seen her since being diagnosed.
If you are passing a church please light a candle and say a prayer for kasey as she has a big MRI scan next Tuesday, we are all hoping for clear scans this time so she can go into Stem Cell Transplant.
Thursday 29th November
Kasey went for her MRI scan on Tuesday and we got back her results yesterday. Well we got the most amazing news! The results showed her tumour has shrunk a lot in size, it is relatively small and the spread of cancer cells along her spine have gone! Such positive news for us & Kasey's Medical Team. Dr Susan Chi and the team are delighted with the results and had a conference where other Neurologists also wanted to be involed as they were so impressed with Kasey's progress. There has also been a mention of Kasey having a Stem Cell Transplant in the new year all going well. Along with these results they found a blood cloth near Kasey's heart and in her line so she has been taken into hospital for the next few days so they can thin her blood & remove the line next week. She is doing remarkably well and we are over the moon with the latest results and the relief is enormous. We are so looking forward to christmas this year... the only present we wanted was to know she is doing well & we got it. Kasey will be spending christmas with the family who will be flying over to Boston and making it a magical one for her. Thanks to everyone who has been praying, sending well wishes, donating & fundraising for our princess, she would not be where she is today without your incredible kindness, we will be forever thankful. Its onwards & upwards for our little one xxx
Tuesday 2nd October
Kasey has started a new treatment in the last couple of weeks its called the 5 Oral Regimen chemotherapy. It is a slow drug that starves the tumour and the surrounding blood vessels that feed the tumour. Mammy is able to give this to her at home so she does not have to go into hospital which is great. Every two weeks Kasey receives Interical Chemotherapy in hospital. This is basically chemo put directly into her spine while she is put asleep. She also receive an infusion of chemo through her CVL port. She has been coping really well, with only one bad day and this was shortly after receiving the Interical Chemotherapy. She spiked a high tempersture and needed to go to hospital to be monitored. She was back to herself two days later thankfully. We are currently getting genetic testing done on Kasey's tumour in the Foundation Medicine Company. What happens is Kaseys tumour which was partly removed back in Dublin, we are getting a sample of this flown over to the Foundation Medicine Company in America so they can test it with diffrent drugs to see which one it responds well to. This is another option of treatment for Kasey, if they find a drug that Kasey hasn't used already and if it has good effect on killing her cancerous cells this could be great news for her. This will take a few weeks until we get the results back. Kasey is mad about her new doggy walker. She loves bringing her doggy for a walk and is not impressed when Mammy says its time to go home! She has shown an interest in food again and loves nothing more than licking butter off bread and ketchup off chips! She is coming on leaps and bounds!
Friday 7th September
Kasey had a MRI scan yesterday, and we got the results today. The inside of the tumour has turned black which showed the tumour reacted to the radiaton with further biopsys we will know if it has killed this part. The outside of the tumour is still active and has spread some cells down Kaseys back and a mass at the bottom of her lower back. Its not the news we would have liken but its not the worst.
There will be futher tests and discussions with Dr Susan Chi & her team as to what will be next treatment to go with. The main object now is to stop the outside of the tumour spreading. Kasey has number of options which is good, it is now up to the Doctors to discuss & find which is the best. We knew from the start that Kasey had a long road ahead of her and we will take the highs with the lows and keep on going until we get our little girl better again. Thats all we know for the moment until she goes back to hospital next week. Despite this news Kasey is in great form, and is trying her hardest to get on the move. She is climbing up and holding onto the chair and standing! She has great determination lets hope she takes her first steps shortly. Thanks for all your lovely messages & well wishes of support over the last few days it means a lot to us & Kasey. We will update you again when we get more news.
Friday 17th August
We are thrilled to let you all know Kasey completed her 6 week course of Radiation today! It was a great day for her. The wonderful radiation team made a big fuss & organised a party for Kasey when she finished her last treatment. They are a lovely people who became very fond of Kasey & really looked after her while she was being treated. They gave Kasey a certificate for being so brave & some presents, she loved every minute of it and was hyper! It was tough on her the first 3 weeks as she was feeling ill but the last 3 weeks she seemed to take it all in her stride and took to it really good. Michelle, Derek and Kasey are going to miss the team & can't thank them enough for helping them get through the last 6 weeks. The next step now for our princess is to have a MRI Scan & a spinal tap the first week in September. This will tell us how Kasey responded to the radiation & also check to see if the spine is still clear with no sign of spread of cancer cells. We are praying all will go well. Kasey will have a well deserved break now from treatment she really has been in great form and I think the visit from her Nanna & two Uncles really lifted her spirit she loved every minute spent with them. She also has another visitor, her other nanna who she is delighted to see also. Thanks again to everyone who have been fundraising these last couple of months your support means the world to Kasey & she wouldnt be there without your help.
Monday 16th July
Kasey continues to amaze us all as she battles each day with this awful tumour. She is getting stronger by the day and always has a smile for everyone. She has started to take food by mouth now on a low scale which is great and hoepfully in the near future she will not have to be feed through the peg. She has also become a handful for her mammy as she has grasped the crawling business, with her determination no doubt it wont be long until she starts walking. On Thursday the 5th July she commenced her Proton Beam Radiation, which will continue for the next 6 weeks Monday to Friday. She is coping very well so far.. apart from getting sick on the following day after each session, which we have been assured by her Doctor that this can be expected. We are still on a high after we got the news of the donation of €140,000 from the Ray Tye Medical Foundation it was just incredible and this will fund Kasey's Radiation for the next few weeks. Kasey will be expecting a lot more visitors over to Boston in the coming weeks Auntys, Nannies and Uncles who cant wait to get over and spoil her rotten!
Monday 2nd July
Kasey's bone marrow results came back & showed no sign of spread of disease and also no damage to it which is fantastic! Her MRI scan results showed the tumour did not reduce & looks to become active again, this is most likely due to the fact Kasey should have had a second round of chemo by now but it was delayed due to Kaseys counts taking so long to come back up. Dr Susan Chi has reassured us that we should be really delighted that all the other results came back clear with no spread, and the fact she has the strength to bounce back after each gruelling treatment. Her focus now is to reduce the tumour & eventually kill it. So the next step for Kasey is to start her Proton Beam Radiation Therapy tommorrow, this will have less side affects & less damage to her healthy cells. A mold was taken of Kasey's head last week and the radiation will be carried out on her for the next 5 weeks for several minutes each day. Kasey herself as you can see from the picture is in top form :-) she has even started to crawl! which is a huge achievement for her. We are just thrilled, and shows how strong our little one is. She has also been delighted to see familiar faces from back home who have flown to Boston to visit her. So its onwards & upwards from here folks we are staying very postive that Kasey will do well with the radiation & we wish her all the luck in the world for tommorrow. Thanks again to everyone for your support, Kasey wouldnt have been receiving this treatment without your help x
Monday 18th June
Just a quick update with some good news, Kasey's lumbar puncture results came back with no spread anywhere of the tumours & no fluid on her brain. Now we are just waiting on her bone marrow results to come back & this will decide if her next treatment will be chemotherapy or straight for the proton beam radiation. Kasey is in great form & is keeping her fighting spirit as you can see in the picture! She is our little Irish Fighter, Keep her in your thoughts & prayers because its working.. so far so good. There is definately someone up there looking after our angel. Will update you all shortly again
Tuesday 22nd May
As expected when Kasey left Hospital after her first round of Chemo, her cells dropped quickly so she had to be taken back in to hospital a couple of days later. She received blood transfusions and was closely monitored as she was running a high temperature. It took Kasey a long time for her cells to come back up as this new protocal of chemotherapy is very harsh on the body especially for a little girl Kasey's age. The Doctors and Nurses found they could not get blood from Kasey's Freddie, so she was taken into theatre for a new line last Friday and everything went smoothly and she got through it really well. So the last 4 weeks Kasey has been slowly recovering in hospital. She is now back in flying form and was allowed back home Sunday Afternoon. The guys have moved into a beautiful new apartment which their renting out for the next few weeks. So there is lots of space for Kasey to roam around in when she gets her new walker! So the plan for the next few days is to get Kasey out into the beautiful sunshine there having in Boston and allow her to have as much fun as possible and a bit of 'normality'. She is doing really well and the doctors are still very hopeful Kasey will beat this! The next step in Kasey treatment plan is to reschedule her MRI scan to a later date and to go again for a second round chemo in approximately two weeks time. Dr susan Chi wants to shrink the tumour as much as possible before considering doing the Proton Beam Radiation on Kasey, this treatment is currently not available in Ireland. This treatment has less side effects than the normal radiation here and also a great success rate. We will update you again shortly, but for now all Kasey wants to do is play, like any other child and hopefully she will be even stronger for the next stage in her treatment. Thanks again for all your support x
Tuesday 24th April
Kasey has just completed her first round of chemotherapy in Boston yesterday and she got through it amazingly well. She was admitted into the hospital last Tuesday when Doctors began their tests to check her organs as chemotherapy can sometimes cause damage but thankfully Kasey got the all clear. Her throat was also checked as it was unconfirmed back home if her left side of her swallow was permanently damaged but the tests showed its just being lazy as Kasey has been fed through a tube in her stomach since her diagnosis so she is now allowed to eat again and loving her grub! Hopefully she keeps it up. She started her chemo on the Thursday. It was a very tough course as it was constantly running through her for 5 straight days. She got through it really well and just got sick for one day. She surprises us a lot with her strength, if only we could bottle it and sell it, it would probably pay for the rest of her treatment! The nurses are smitten with her and call her 'cutie pie' even when she gives them the fist! She is back in the Ronald Mc Donald house to rest as we expect her cells to drop and she will feel very tired & sick. The baby girl is still smiling though and loves to skype the family back home and it never feels like she is so far away. Not only is Michelle worrying about Kaseys health but also has to contend with the huge cost of the treatment but everytime she sees Kaseys Facebook page & emails coming through it definately lifts her spirits to see so many of you supporting Kasey and going out of your way to fundraise for her little girl, she appreciates everyone who has helped in any way. Keep up your fantastic work for Kasey guys you are all an inspiration like our little angel.
2nd April 2012
You will be all glad to hear Kasey arrived safely in Boston last Thursday. She didnt seem to mind the journey at all and received lots of attention from the passengers on board, wishing her well and also offering support to Michelle & Grandad Derek whilst living in Boston. They have settled into the Ronald McDonald house in Boston & have met up with a few Irish people who contacted them through the website offering their help when they arrived. Kasey even got a tour of the city in a drop top Convertible! which was such a treat. The first appointment in the Dana Faber Cancer Institute was today. As the pulled up to the hospital in the Taxi the Cab driver said 'I have seen miracles happen in this Hospital' They knew things could only get better from here. As they entered the building they couldnt believe their eyes, they took a tour of the hospital and were amazed at such a state of the art building. It is fabulous & spotlessly clean. The much awaited appointment with Dr Susan Chi arrived and they were not dissapointed. She was wonderful & so positive, and assured Michelle this type of tumour is curable. The words Michelle has been longing to hear for so long. She examined Kasey & said it was a great sign she was so strong now after the intense chemotherapy treatment she received in Dublin and how well she reponded to it. Kasey will go back to Hospital on Wednesday for an MRI scan, blood tests and a Lumbar Puncture which had to be cancelled in Dublin. Such a relief our little girl is finally going to receive the treatment she deserves. Even though Kasey is so far away, please keep her in your hearts, she needs your on going support, thanks everyone xxx
29th March 2012
So the real journeys begins today at Dublin Airport, a lot of joy & also a lot of tears shed. We are so happy that finally Kasey will be able to begin her treatment in Boston but also saddened as she will be so far away from her family & friends. We never thought this day would come so quick & we are blessed for this oppurtunity. There is no doubt in our mind we have made the right decision by sending her to The Dana Faber Institute as this is one of the top Hospitals in the world and we know she will looked after to the highest standard by Dr Susan Chi. This day would not have been made possible without all the support from all of you, who donated and raised funds for Kasey. Irish generosity is alive and well. We never imagined this amount of support, its just incredible. As a family we need to keep fundraising for Kaseys Treatment, so keep up all your fantastic support on spreading the awareness about Kasey. She still needs your help. We will keep you all updated on Kaseys progress, love & best wishes from Kasey & Family x
16th March 2012
Well some great news today, flights have been booked for Kasey to go to Boston on the 29th March. The Financial Department in the Dana Faber Cancer Clinic have kindly agreed to allow us pay a monthly payment so Kasey can get started on her treatment she so badly needs. They have been fantastic & so supportive. We have roughly raised and could not have done it without your help €120,000 so this should cover at least 3 to 4 months treatment for Kasey. This is only the beginning of our long journey ahead of us and we need to keep up the fundraising so Kasey can receive the full treatment which roughly costs €450,000. We are still gobsmacked and overwhelmed with your ongoing support & generosity you have given to Kasey and our family and we cant thank you enough for giving her the opportunity to begin her treatment in April. Happy St Paddys day & lots of love from Kasey xxx
5th March 2012
Our little girl has been home from the hospital since the 18th February its been a great time for the family. She did spike a temperature last Sunday week, so had to be taken back in to Hospital for a blood transfusion but she soon bounced back and was let back home on Thursday. She is loving all the attention she has been receiving from family & friends and too right, she deserves to be spoilt rotten! Its hard to believe what she has she gone through for her young age, all the tests, operations and chemotherapy, but always manages to pick herself back up and put a smile on her face. She has been put on a high nutritional feed now which has seemed to have given her a lot more energy, increasing her weight and her chubby cheeks are even coming back! She is loving going out for walks in the pram and keeping Grandad busy playing on the floor with all her new toys. On Thursday she will be back in hospital to undergo a lumbar puncture. This procedure will hopefully confirm that the tumour coatings along her spine are in fact gone. So we are praying this result confirms what the MRI scan has shown previously. Keep fighting Kasey, we are all behind you!
14th February 2012
We just received the best news today! We got the results from Kasey's latest MRI Scan. It shows
no signs of the small tumour coatings along her spine, they have gone and the tumour on
her brain stem has reduced in size. We are over the moon! It shows us that Kasey is responding
well to the treatment and it is stopping the spread of the tumour, while reducing it at the same time.
We still have a long road ahead of us but this is one of our happier days.
We love you lots Kasey, Happy Valentines Day xxx
4th February 2012
Doctors have said kasey can go home tommorrow for a few days, yipee! great news, we are over the moon. Look out Buster, she's back!
9th January 2012
Second protocol of chemotherapy, this will be everyday for 6 days. Another bad week for Kasey. Same as last time getting sick, no energy, tired and clinging to mammy. Following week Kasey fights back!! she is playing with her toys, laughing and having great fun dancing to barney in the cot. We are all amazed at how well she got through it this time. She's our little trooper!
31st December 2011
Kaseys first birthday. Even though Kasey was still in hospital we had a great day. We had birthday cake, balloons, hats you name it! Even the hospital staff came in to sing 'happy birthday' and thank god they came in the nick of time before we lit the candles! not realising with all the oxygen equipment we could have been up in smoke, now that would have been a birthday to remember!
15th December 2011
Start of first protocol of intense chemotherapy. Kasey had occasional good days but mostly she was sick, no energy, caught infections and had little or no interest in anything except clinging to mammy. But worst of all she didnt smile and lost all of her beautiful hair. She spent all christmas in hospital which was tough on the family as it was her first christmas. But in saying that we made the day special and she also got a kiss from Colin farrell....c'mon whos jealous??? Over the christmas period she also got a visit from Bill Cullen and Brian Ormond. Not bad for a girl with no hair!!!
8th November 2011
Kasey underwent brain surgery to remove tumour. It was a horrible, brutal operation and wouldnt wish it on anyone. It was a success and Kasey recovered brilliantly.
Hi everyone,
Welcome to Kaseys Blog, our website went live on Friday 3rd of February 2012 and it has been a massive success so far! Thanks to all involved in launching the site. 24 hours later and we've had an amazing response.
Thanks to all for your interest, concern and promise to help us fundraise, and donate. The cost of Kaseys treatment is enormous but with friends and people like you, we know we can reach our target and get Kasey to Boston for the treatment she needs.
