News
Grace is very tired this week after over a year of intense treatment. The last few months have been particularly demanding. However we are slowly getting news of good results. Her brain MRI scan and Jaw MRI scan were both negative this week which is very encouraging. Grace has a busy week ahead with bone marrow assessments, CAT Scans and MIBG nuclear scans to check out how she is doing in the rest of her body. She will have a general anaesthetic each day for these tests.
She is in good form despite the exhaustion.
If there is no evidence of disease elsewhere in her body she will be able to proceed to the intra brain 8H9 treatment next week. This will involve an inpatient stay for a test dose next week and the following week the therapeutic dose of 8H9.
The team at Sloan Kettering have been wonderful. Dr. Kushner emails Millicent at all hours of the day as her test results come in to avoid even a minute of anxious waiting for results. This is truly a remarkable dedication to the cause.
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New York
,
Grace has had a very busy time over the past few weeks. She endured 3
weeks of intensive brain and spine radiation, which required her to have
a general anaesthetic each day during this time to facilitate the
treatment. She had to fast every night, in preparation for the general
anaesthetic the next day, until her radiation treatment was over the
next day. Some days this meant fasting for most of the day. She never
complained once about this. Kevin
and Millicent fasted with her but they did complain a lot!!
She tolerated the radiation well, but
as expected on the last day all her hair fell out apart from her fringe.
She has reassured us and her self that it will grow back again! She is
not worried about this minor inconvenience.
Her bone marrow was very depressed
for 2 weeks after the radiation and thus she had to wait before
proceeding with more chemotherapy. She was able to start the high dose
chemotherapy this week which she had every day. She tolerated it well
apart from being sick each morning after her breakfast.
This week Grace also had an MRI scan of her brain and it was clear of tumor. Kevin and Millicent were overjoyed with this bit of good news, which is a very encouraging sign.
During her chemotherapy today she insisted on going on the ‘trick or treat’ parade for Halloween, at Sloan Kettering with the other kids and collected a large bag of goodies dressed as a gorgeous pink poodle. Who could resist her?!
She is enjoying dancing to her own
song, Dance Grace Dance, composed by our great friend Dee Carstensen. We
hope you enjoy it too!
Click here
to listen
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Grace and Alice the day after Grace finishes 3 weeks of intensive brain and spine radiation
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1st October 2008 New York, NY USA
Grace has had a busy few weeks. She had a full week of radiation to her
brain and spine last week, every day under general anaesthetic, followed
by a rigorous routine of chemotherapy in the afternoon.
She tolerated it all very well, never complaining and continues to smile
her way through the day.
This week she has continued her radiation therapy to the brain and spine
each morning.
She has been a little sick with diarrhoea and nausea. Her blood counts
have dropped dramatically so now she must be kept in isolation. She
cannot have any interaction with other kids, or go to crowded public
places. This is hard for her as she gets older and also because she is a
very sociable little girl.
Her hair is starting to thin. She had become very proud of her little
head of hair combing it every day and is a little put out about losing
it all over again. However Kevin and Millicent have explained to her
that it will grow back just as beautiful again.
Next week she will again have radiation under General anaesthetic every
day and then she will have a small break to allow her bone marrow
recover in time for high dose chemotherapy.
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18th September 2008 New York NY USA
Grace is recovering
very well after her operation. Her scar is neatly hidden behind a thick
head of curly brown hair and no one would ever guess this little girl
had had brain surgery less than a week ago. She had her first harp
lesson today from Dee, our very good friend in New York,who with her
husband Michael composed the most beautiful song for Grace. It brought a
tear to her Mother's eye. Grace loves music.
Grace will start her radiation tomorrow. Her brain and spine will be
irradiated over a 3 week period. She will also need chemotherapy next
week. After the radiation she will have a 2 week break then back to more
high dose chemotherapy over 3 weeks and then followed by intra
brain chemotherapy over 5 weeks.
Grace and her parents have a long road ahead but they are very positive
as are the Doctors at Sloan Kettering. Grace does not have any other
involvement of her brain which is a good sign and the recent tests also
did not reveal evidence of a relapse in other sites.
Grace told Millicent today ' I finished cancer Mummy......
never again in my body'. There is a lot to be said for the power of
positive thinking and Grace's parents are firm believers in this also!
Lets all keep praying for Grace's full recovery and for all the other
children with this terrible condition.
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14th September 2008, New York NY USA
Grace
had neurosurgery on Friday 12th September at Cornell Hospital, New
York. It was a long and very tense day for everyone, starting at
5.30am with an MRI. The surgeon told Kevin and Millicent after the MRI
and before he began the operation that the lesion had grown
significantly in the previous week and thus the surgery was going to
be more challenging than expected.
She was brought to theatre at 10.30am and Kevin and Millicent got
hourly updates from the theatre staff. At 5pm Dr. Mark Souwedaine, the
Neurosurgeon came to discuss the operation with them. He opened the
discussion by saying 'I got it all', which was an
immense and welcome relief for Grace's parents. However he then
broke the bad news that the lesion looked very typical for CNS
neuroblastoma. The implications for this is
that Grace is going to need another 6 months of very intensive
treatment at Sloan Kettering Hospital.
On a positive
note, her parents are thrilled that she has recovered so well
from surgery as you can see from her picture taken less than 24 hours
after the operation where she is still smiling! The other
positive aspect is this lesion has now been removed with no evidence
of any other lesions in her brain thus far. She is a brave little girl
with a very happy temperament and when the doctors did rounds this
morning she offered each of them a gummy bear sweet and said thank
you! After they left she got up out of bed, helped get
herself dressed and started running around the room! She never
fails to amaze and delight all those around her by her courage and
happy spirit. She is an inspiration to us all.
This week will be very important for Grace in terms of planning for
the next phase and for her parents who also need to do some planning
to help Grace through this and at the same time keeping an eye
out for her big sister Alice.
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September 8th
2008 New York NY, USA
Grace
had her 5th cycle of 3F8 treatment in mid August. It was the
hardest cycle to date. The pain was so intense that one day she bit her
cheek so badly that she bled profusely and subsequently got an infection
of her inner cheek that required several courses of intravenous
antibiotics.On 28th August we learned that Grace had
developed HAMA so this means that she will not receive any further 3F8
for a while- until the HAMA becomes negative again.
Grace is scheduled for brain surgery at Cornell Hospital on 12TH September to remove this lesion. The week following surgery, more information will be available on the exact nature of this lesion and if it is benign or malignant. If it is neuroblastoma Grace and her family are in for a long hard road ahead but the team have been encouraging about the outcome with the intensive regime. Grace continues to have numerous tests in preparation for surgery including bone marrow aspiration and biopsy and lumbar puncture.
As usual she never complains and is the picture of good health, thus it is easy to understand why her parents are in disbelief.
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August 2008, New York, USA
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20th
July 2008
,
We
are delighted to report that Grace is doing very well now. Her
last set of tests, at the end of June 08, show no evidence of active
cancer. However the
Grace
has not developed
Grace
had a mediport inserted a few months ago which is a way of keeping her
central line access but in a much easier to manage format. Because the
mediport if hidden beneath the skin she can go swimming and have baths
again. This is a welcome relief in the current heat of NYC!
Kevin
and Millicent hope that Grace will remain on 3F8 antibody therapy until
Christmas at least but as always the testing for
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16th June
2008, New York, NY, USA
Grace
did not develop HAMA and was thus able to have her fourth cycle of
antibody last week. She found the week hard and was very ill with severe
pain every day. Next week she is facing a battery of tests
including, CT scan, MRI, bone marrow examination and MIBG scan all under
general anaesthetic to find out if her treatment has worked to date.
Millicent and Kevin will spend a tense week waiting to find out.
However Grace is in good form now and is a real ‘ rogue’. She has started dance therapy at the integrative medical centre for Sloan Kettering Hospital as part of her Rehab. Today she went with her little friend Nini (pictured below with Grace) and they both had a ball.
Next week she will attend the Foundation for Small Voices in between treatments to try her hand at some singing. She is constantly singing and dancing at home so Kevin and Millicent are trying to give her an outlet away from the hospital to foster a normal life after the past 9 months.
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May 26th 2008
Grace completed her third course of 3F8 antibody last week. It was a tough week as she developed an asthma like illness, which the antibody treatment seemed to exacerbate. Several nights she had a bad asthmatic attack after the infusion. She also developed pneumonia and is now slowly recovering from that on a combination of antibiotics and inhalers.
Unfortunately she still remains positive for Clostridium difficile and is on antibiotics for that also for 3 weeks more. It is likely that her immune system will take a while to recover after such large doses of chemotherapy and this is the reason for persistent and new infections. Grace takes all her meds without complaints but finds it a little easier if there is a reward to look forward to!
Grace will be due the
fourth course of antibody in the middle of June provided she has not
developed
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1st May 2008, New York, NY, USA
Grace has now completed her second cycle of 3F8 treatment and all of
her radiotherapy.
The 3F8 continues to be very painful but thankfully Grace has not
developed immunity to the treatment as yet, by forming the HAMA
antibodies. She will be rechecked for HAMA next Monday and if negative
can proceed with the third cycle of 3F8 treatment.
The radiotherapy was very intense, twice a day for 7-week days under
general anaesthetic each time to three sites. Grace had lots of side
effects mainly related to inflammation of her bowel, (called mucositis).
The effect of this was that she could not eat or drink for a week due to
severe mouth ulcers, throat pain and diarrhoea. However she has
recovered dramatically well and is now making up for lost time and all
the fasting! She remains infected with clostridium difficile however and
this is proving very difficult to eradicate.
Kevin
and Millicent are overwhelmed with all the support from friends, family
and colleagues. There have been many fundraising events in Ireland,
England, New York and Canada. They are hoping that all this will help to
raise the profile for neuroblastoma children in general as well as
benefiting Grace of course.
Next week Grace is having all of her tests repeated to ensure she is
still responding to the treatment and has not relapsed since last
assessed. This is the risk with neuroblastoma as unfortunately relapse
is common for many children. However on a positive note, Grace is in
great form, her hair is growing again and she is putting on weight and
is not afraid to stand up for herself!
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21st April 2008
In memoriam of Mr. Brendan O’Brien…
Brendan O’Brien was a leading member of the well-known Dixie’s band from
the 1960’s in Ireland. He sadly passed away in April 2008 and the
O’Brien family requested that instead of flowers donations be sent to
Grace’s Trust.
Grace and her family would like to extend their deepest sympathies to
the extended O’Brien family and thank them for their exceptional
thoughtfulness at this sad time in their lives.
Graces family would also like to sincerely thank all individuals who
kindly made a donation to Grace’s medical fund in memory of Brendan
O’Brien.
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Thursday April 17 2008
Article from The Corkman Newspaper
Kids show big hearts for little Grace
Grace who lives in England celebrated her second birthday on April 6 and
while her proud parents Kevin and Millicent certainly shed a tear on
their daughter's birthday, there was also tears of worry.
The cancer which she has is called Neuroblastoma and initially the
prognosis showed a relatively low survival rate of approximately 20-25%.
However, the development of a new treatment, called anti-GD2 antibody,
could increase her chances of survival. This treatment is available at
only one centre in the world, Memorial Sloan Kettering Cancer Centre, in
New York which has an 80% survival possibility.
The 10 sixth class students in Cullen became aware of Grace's plight to
raise $800,000 for this new treatment and the students were determined
to help little Grace in some way.
Principal Hannah Kelleher told The Corkman that the students raffled
their own Easter eggs and raised €454.60 for
the Grace O'Gorman fund. Ms Kelleher said the students organised the
entire event themselves and it gave the students a great sense of pride
to help little Grace. It simply made everyone's Easter and in particular
for the students who worked so hard. We are very proud of the students
as they learnt the true lesson of giving, said Ms Kelleher.
Kathleen Mullane accepted the cheque from 6th class pupils which will go
in some way to help Little Grace's parents pay for surgery, chemotherapy
and radiotherapy.
Anyone who wishes to help the Grace O'Gorman fund, please send a cheque
to Barry O'Meara & Co Solicitors, 18 South Mall, Cork or see
http://www.graceogorman.co.uk
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6th
April 2008, New York NY USA
Grace was 2 today. She had a great time singing happy birthday all day. She went to The Rudolf Steiner Square dance (Alice’s school dance) and celebrated in style with the help of her big sister, Alice by dancing the afternoon away. Some very keen 2-year old boys hotly pursued her there!
Millicent and Kevin were overjoyed, as there was a time not so long ago that they wondered whether they would have the opportunity to celebrate this special day with her. Their motto is to ‘ stay positive’, as it is the only way forward at a time like this and so far it is working.
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31st March 2008, New York, NY, USA
Grace’s repeat scans showed marked improvement in all of her cancer
sites. This enabled Grace to start her 3F8 antibody treatment on
17th March 2008 and she had one dose each day for a week.
Kevin joked that to start on St. Patrick’s Day must be a good omen, as
St. Patrick had such great success at ridding Ireland of snakes that he
must surely be able to rid Grace of the remaining cancer!
Millicent and Kevin had been warned by Dr. Kushner and his team at MSK that the treatment caused severe pain. However, nothing could have prepared them for what lay ahead. Grace suffered unbearable and excruciating pain for the duration of the treatment. This was because the 3F8 stimulates nerve endings. Not even the highest dose of morphine took the edge off of the pain. As a physician, Millicent had never witnessed such raw pain and it was truly shocking. As a parent it is heartbreaking to witness this happening to your child and be totally helpless to comfort them. The hospital funded, through a research grant, a dance therapist to attend Grace to help her at this time.
Aside from the pain and a hive like reaction Grace did well on the treatment and is due to have her second session of 3F8 on the 14th April provided she is not found to have developed immunity to 3F8 (i.e. an antibody called HAMA to the antibody treatment). She will be tested for HAMA this week.
It is
planned that Grace will have 3F8 treatments every 3 weeks until the
Summer and then every 8 weeks for up to 2 years. In reality, it is
likely that she will receive only 4-5 sessions of 3F8, if she is lucky,
as most patients become immune to the antibody treatment after a
few cycles. This is especially true for UK or European patients
who attend MSK for 3F8 treatment as they have had a different induction
chemotherapy regime that does not adequately prevent the development
HAMA. This was the main reason that Grace was moved to the US earlier
than most as it was strongly advised by the team at MSK that to avoid
HAMA she needed to (i) commence 3F8 as soon as possible after surgery
and to (ii) have 2 cycles of the MSK regime of high dose chemotherapy
prior to 3F8. This could not have been achieved in the time frame
available by her staying in the UK.
Grace is commencing high intensity radiotherapy on the 1st of April. This will involve radiation to 3 sites twice a day under general anaesthetic spanning a two week period. This type of radiation is called hyper fractionation and is only done for Neuroblastoma at MSK. The family have been told that using this treatment the likelihood of recurrence of cancer at the primary site is less than 10%.
The
family eagerly await the results of the HAMA test and hope that Grace
will be able to continue the 3F8 antibody treatment as planned on 14th
April 2008. However, they are constantly reminded that Neuroblastoma is
a disease that is characterized by relapses. It is hoped that the
3F8 treatment if she receives sufficient doses will reduce her risk of
relapse and further increase Grace’s chance of survival to 80% at 5
years.
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10th March 2008, New York, NY USA
Since
arriving to New York on 8th January 2008, Grace has had a
busy time with hospital visits, admissions and procedures at Memorial
Sloan Kettering Cancer Centre (MSKCC). However she is always in good
form and never complains. She seems to love MSK and has been known to say
to her parents that she is ‘ home ‘ when running in the front door of
the hospital!!
Grace had a series of tests the first week she arrived in the USA to assess the effect of 80 days of chemotherapy that was completed prior to her leaving Bristol Children’s Hospital and to prepare for the planned surgery.
Grace subsequently had surgery on 21st January 2008, which was a long and tense day for the family. But she pulled through very well. Dr. La Quaglia, her surgeon, gave regular updates from theatre to Kevin and Millicent and met them in person later that day to tell them that all went very well with a complete resection of the primary lesion.
Grace
then had two courses of very high dose chemotherapy spaced 3 weeks
apart. This was a very trying time as the first course was commenced
just 4 days post operatively. Grace became very ill due to infections as
result of severe bone marrow suppression following the first round of
chemotherapy and was hospitalised for the best part of 3 weeks. The next
round of chemotherapy went more smoothly with only a few short
admissions to hospital.
It
is hard to describe what life is like during a time like this. The whole
family dynamic changes. The time is spent waiting for something to
happen to Grace and pre-empting all her movements to protect her from
infection or injury. It is particularly hard for her older sister,
Alice, who continues to be a model ‘ big sister’ and showers Grace with
love and affection. When Grace is undergoing chemotherapy and for
prolonged periods afterwards Grace cannot meet other people due to the
risk of infection and this restricts normal family life
This week Grace is having all of her tests repeated including MRI, CAT scan Bone Marrow tests and MIBG scans. All these need to be done under General anaesthetic on separate days. However they are essential to see if the treatment to date has led to even a partial remission.
The family eagerly await the results which are required before the next stage of treatment can commence or indeed be even planned for Grace.
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Grace has been accepted as part of the 2Simple Trust which works for
children
with Neuroblastoma.
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