|
||||||||||||
Click here to go back to the main page.
Monday, June 23, 2008 0:25 AM CDT
Wednesday, February 14, 2007 2:46 AM CST
Hi everyone,
Just wanted to share the link to Carla's Angels if you would like to view the angel pin we had made in memory of Dani-Ella.
www.carlasangels.com/dani-ella-angel-pin.htm
xxSharon
Thursday, February 1, 2007 7:57 PM CST
Hi everyone,
I again feel the need to journal, probably something to do with Richard going back to work after about 6 weeks holiday and the kids going back to school after a 7 week summer holiday. I’m now home by myself all day with the baby.
All the kids activities are about to start up again. We have major scheduling problems with Emmelyne – oh to be 10! She auditioned for the Maryborough Youth Choir and was accepted. However, they practice on Wednesday night at exactly the same time as her dance class is on. After much tears and indecision she has decided to join the choir and give up dance this year..hopefully it won’t clash next year. She is still doing a hip-hop dance class on Thursday afternoon which will clash with hockey training. Richard may be coaching her team so this may be a problem. Add to this violin and piano on Tuesday afternoons and tennis and this year is going to be a nightmare for me - good old taxi Mum. At least Jaiden only plans to do hockey at the moment and that is a dad and son activity.
Quite a few months ago I sent a letter to the Royal Children’s Hospital raising a number of issues that we had with Dani-Ella’s treatment. The Executive Director did reply in a timely manner advising that it would be best for us to go down there for a meeting to discuss “Dani-Ella’s illness”. As I was about 8 months pregnant, we decided that we would wait for a couple of months until I had that baby. Well, I decided in early December that I wasn’t comfortable to go and have a meeting with them and have not contacted the hospital again. Writing the letter in itself achieved a lot of peace with the whole medical side of things and I was worried that if we went and had a “bad meeting” ie. Me and Richard vs 3 Consultants and the Executive Director, etc, it might just push me over the edge. All I can hope is that the concerns we have raised are considered and maybe some other family will benefit from this.
So, I have pasted a copy of the letter I wrote below but have removed names, etc, for anybody who may be interested. It is long and complex as was her disease and treatment and some of it is hard going, so good luck…..
Dear Sir,
DANI-ELLA ROSE JACK (DECEASED)
YOUR REF:
Thank you for your letter dated 23rd May 2006 enclosing notes and reports from Dani-Ella’s medical records.
Throughout Dani-Ella’s diagnosis and treatment we have kept detailed diary entries of telephone discussions, clinic appointments and other conversations we had with her Specialists. As a result, we have a number of questions regarding our daughter’s treatment for a pleomorphic xanthoastrocytoma (PXA) WHO Grade II brain tumour.
We don’t pretend to have any medical background or training however, we are university educated professionals in our fields who know how to undertake research. We have also been able to connect with a large number of other parents of children with brain tumours both in Australia and overseas. By talking to these parents we have been able to gain some basic knowledge of pediatric brain tumours, their treatment and unfortunately their prognosis.
During the course of her illness, we have sent MRI scans and discussed Dani-Ella’s case with other Neurosurgeons around the world including Dr ** (Prince of Wales Private Hospital, Sydney), Dr ** (Cincinnati Children’s Hospital, USA), and Dr ** (Cromwell Hospital, England). We have also made enquires with other Neuro-oncologists and Neuro-pathologists, as we thought necessary.
Our queries, as listed below, relate to treatment Dani-Ella received at both the Royal Children’s Hospital and our local Hervey Bay Hospital. However, for completeness we have included all of them in this document.
ROYAL CHILDREN’S HOSPITAL
Why was Dani-Ella on “wait and see” when the tumour appeared to be growing as per her regular MRI scans?
The MRI report dated 22nd July 2004 from the Mater Private Hospital, Brisbane stated the lesion was approximately 3cm. Dr ** showed me this report when I attended his rooms with Dani-Ella after her MRI scan.
The MRI report on 22nd September 2004 states “transverse diameter of the tumour in T2 is measured at 4.4cm x 3.7cm” and “cystic changes are more prominent” and “size of lesion appears to be slightly increased”. Dr ** at a clinic appointment on 24th September 2004 told us the tumour was substantially unchanged and on this basis recommended that any further surgery be postponed.
The MRI report on 1st December 2004 states “the abnormal signal measures 5.3cm x 4cm at its maximal transverse diameter on T2 weighted images”. Again, at our clinic appointment with Dr ** on 3rd December 2004 we were told the tumour was “stable”. We told him that Dani-Ella was having ongoing speech issues, we noticed her seizures were increasing in frequency and she seemed to be having eye problems (rubbing and squinting her eyes). At this clinic appointment we also asked for a referral for Gamma Knife treatment in the UK. We were very surprised when Dr ** advised us that Dani-Ella’s tumour was too large to be considered for this treatment option. We believed that her tumour was still 3cm as per the original scan as we had been told it was not growing.
Dani-Ella’s next MRI scan was on 30th March 2005. At a clinic appointment with Dr ** on 1st April 2005 we were told the tumour was substantially unchanged. We have not retained a copy of this MRI scan and as such do not have a record on the tumors actual measurements. We advised Dr ** that we believed Dani-Ella’s seizures were now uncontrolled by medication, she was having memory problems, we noticed a worsening droop to the right side of her face and thought she had developed a head tilt.
On 1st April 2005, we were not offered another surgery at your hospital as:
• Dr ** would not be able to achieve a gross total resection and did not want to operate due to the risk of neurological deficits; and
• Your hospital lacked the necessary operating equipment to perform the surgery.
As a result of this clinic appointment, we sought immediate private treatment in NSW. The tumour removed during Dani-Ella’s surgery on 1st June 2005 as per the pathology report measured 60mm in aggregate.
Therefore, whilst we were being told the tumour was substantially unchanged, it would appear to have in fact doubled in size in less than a 12 month period.
Why are follow-up MRI scans only compared to the most recent one and not the original one?
In the case of low grade gliomas (LGG), small changes from MRI scan to MRI scan can result in a substantial growth over time. We believe it would be more helpful for parents in making treatment decisions to know how much the tumour had grown since the time of original diagnosis by comparing it to the original MRI scan.
All our treatment decisions made between August 2004 and March 2005 whilst Dani-Ella was under the care of the RCH, Brisbane were made on the basis that we were told that the tumour was not growing. We were assured that if the tumour ever did grow, further surgery would be the treatment of choice.
Why were we denied our request to be present at meetings to discuss Dani-Ella’s case?
On 29th September 2004, we had a phone discussion with Dr **. During this conversation we made a request to attend the whole team meeting we knew was held weekly so that we could hear all the opinions about Dani-Ella’s case. We were told we would not be allowed to be present at such a meeting.
In hindsight, we feel we were making decisions concerning her treatment without all the relevant information from all doctors. It would have been helpful for us to be allowed to listen to the opinions of various Specialists as they discussed her case after each MRI scan.
After Dani-Ella’s original surgery at RCH, Brisbane we were told that a PXA was a “good” tumour to have. However, our discussions with a Neuro-pathologist at a large teaching hospital would indicate that PXAs are rare tumours and are relatively new as a classification. As such, they are really not well understood in terms of prognosis, behaviour, recurrence, etc. With tumour types that are better understood there is more research linking the pathology to the prognosis but this is really not the case with PXAs.
We were never formally advised of the decisions arrived at during these tumour board meetings. Dani-Ella’s MRI scan was usually on a Wednesday, her clinic appointment with the Neurosurgeon was on the Friday and the meeting was not until the following Monday.
We would have appreciated a written summary of the decisions made about our daughter’s care, along with details of any dissenting opinions at this time.
Why were we not offered chemotherapy to try and stabilize/shrink her tumour?
As stated above, during the period August 2004 to June 2005 Dani-Ella’s tumour was growing and her seizures had become uncontrollable on medication, to the extent that she was having up to 12 episodes per day. The only time we spoke to Dr ** (pediatric oncologist at RCH, Brisbane) was on 10th August 2004 and then we did not consult with him again until 3rd November 2005 at which point we were offered chemotherapy treatment for recurrent disease.
However, since Dani-Ella’s death we have quite easily been able to find an abstract of an article on the internet (The use of chemotherapy to facilitate surgical resection in pleomorphic xanthoastrocytoma). In this case, chemotherapy was used prior to a resection to decrease the vascularity of a PXA. After two cycles of carboplatin and vincristine a complete resection of a large lesion was achieved.
We do feel that this could have been relevant to Dani-Ella’s case but at no time was such an option ever discussed with us.
Why is there not one person/social worker to assist parents to co-ordinate appointments?
We feel that not only did we battle against our daughter’s disease for 18 months, but that we also battled Queensland Health. We had to advocate for our seriously ill daughter for every appointment. We were trying to co-ordinate MRI scans, clinic appointments with the neurosurgeon, neurologist, ophthalmologist, pediatrician and rehab appointments including physiotherapy, occupational therapy, and speech therapy. Often these appointments that we had set-up weeks or months in advance were cancelled or rescheduled. On top of this, we had to ensure we could access suitable accommodation at Ronald McDonald House and get countless PTSS forms signed every time we traveled to Brisbane for Dani-Ella’s treatment.
From a parent’s perspective, the assistance of a social worker in co-ordinating appointments, reducing the burden of paperwork, etc would be extremely helpful and appreciated when faced with the extremely difficult situation of caring for a gravely ill child.
Why was Dani-Ella discharged from RCH on 18 November 2005 when she was obviously unwell?
Prior to her last discharge from RCH, Brisbane we had a short meeting in the corridor of McConnell ward with Dr ** (Neurosurgery) and Dr ** (Oncology). Dr ** admitted that he was aware of her symptoms (hydrocephalus, tumour cells found in CSF, back pain, quiet, pale, dizzy, lethargic, vomiting) but that surgically there was nothing to do. In fact, at her QPRS appointments on the Friday afternoon of her discharge, her therapists – ** and ** were so concerned at her back pain/stiffness and notable deterioration in speech that they told us they would page the Neurosurgical team. We were never contacted by the Neurosurgeons, Oncologists or Rehab team again.
However, her medical records do note a discussion between Dani-Ella’s rehab team at QPRS and Dr ** on 18th November 2005 confirming the neurosurgical team were aware of her deterioration and they “feel recent deterioration is associated with cancer”.
In all discussions with Dr **/Dr ** during Dani-Ella’s admission between 12th November and 18th November, we do not recall that cancer progression was ever mentioned to us. When we left RCH, Brisbane on 18th November 2005 we continued to believe her symptoms to be hydrocephalus/shunt related. We admit we had been earlier made aware of her tumour recurrence but were led to believe in an Oncology meeting on 3rd November 2005 with Dr ** and Dr ** that there were a small number of small nodules in the cavity of her previous resection and that they were low grade glioma (LGG) in nature. At this meeting we were told that it was probably time to consider chemotherapy and a LGG protocol was suggested and discussed.
Our deep distress at her condition on discharge is clearly evident in the fact that on Sunday 20th November 2005 we flew her to Sydney for consultation and further treatment with Dr ** at the Prince of Wales Private Hospital. This placed extreme stress on our family as Dani-Ella and her father went to Sydney and her mother and two siblings remained at home. Dani-Ella (at 6 years of age) was in terrible pain and was forced to endure hours of travel without pain medication. The financial cost of traveling to Sydney was also great as even though we have health insurance the out-of-pocket medical expenses amounted to many thousands of dollars. We can assure you that had we been told that Dani-Ella’s deterioration was due to such rapid disease progression we would never have left Brisbane and we would have demanded treatment be started immediately.
During Dani-Ella’s admittance to RCH, Brisbane for hydrocephalus during the period 20th October to 29th October 2005, we believe some very important facts were withheld from us. Our research since shows that in the case of intraventricular tumours, a patient often presents with obstructive hydrocephalus. Further, when there is malignant degeneration, extension into brain parenchymal occurs. We have also learnt that dissemination of tumour via CSF pathways occurs more frequently and widely in cases of hydrocephalus.
Dani-Ella was admitted to RCH, Brisbane on 20th October 2005 for acute hydrocephalus. We were told by the neurosurgical team on 24th October 2005 that the MRI scan performed on 21st October 2005 showed communicating hydrocephalus and that she needed a shunt placed. However, later when we read the radiology report, it stated that “Dilation of the 4th ventricle would be in keeping with communicating hydrocephalus, however supratentorial parenchymal changes suggest associated obstructive component”. Further, the CSF cytology from a specimen taken during placement of EVDs indicated “degenerative atypical cells suspicious for neoplasia”. We were told that this basically meant that tumour cells were present in Dani-Ella’s CSF.
In spite of this, Dani-Ella was discharged and we were told to bring her back in approximately one months time for another MRI scan.
Why was Dani-Ella not scanned prior to her discharge on 18 November 2005 to rule out tumour progression?
Dani-Ella’s MRI scan on 21st October 2005 for hydrocephalus showed tumour recurrence (demonstrated nodules and showed them to enhance with contrast) around the margins and a test of her CSF showed tumour cells present. She had another MRI scan without contrast on 1st November 2005 to check the placement of a VP Shunt and again tumour recurrence was noted. As stated above, we returned to RCH, Brisbane on 12th November 2005 because we felt she had deteriorated and had become unwell again.
In hindsight, we believe that the hydrocephalus, the tumour cells in her CSF and the severe neck/back pain she was suffering could have indicated leptomeningeal dissemination. However, this possibility was never mentioned to us. We had also previously voiced our concerns that the tumour recurrence could have been malignant progression. We spoke to the Oncology team regarding their recommendation to start a LGG chemotherapy protocol without evidence that Dani-Ella’s tumour had not undergone malignant transformation. From the literature, we were aware that approximately 15f PXA cases recur and undergo malignant change. There is sufficient literature to indicate that PXAs do seem to act more atypically and that the behaviour of these tumours cannot be predicted on histological features. It is also well-documented that both leptomeningeal spread and malignant transformation are possible with low grade gliomas (LGG). Our suspicions are somewhat supported by the fact that Dr ** found extensive sugar coating in her ventricles during an endoscopic procedure performed in Sydney on 21st November 2005.
After discharge from RCH on 18th November 2005, Dani-Ella was admitted to the Prince of Wales Private Hospital on 21st November 2005 under the care of Dr **. A head CT scan with contrast ordered by Dr ** on 23rd November 2005, less than a week after her discharge from RCH showed marked tumour progression. The CT scan report reads as follows:
“The lateral ventricles are quite markedly dilated, especially the left side. There is a small amount of fresh blood layering in the occipital horn of both lateral ventricles. There is air in the ventricular system as well as the subarachnoid spaces. There is a drainage tube entering via a burr hole in the right frontal bone. The tube passes through the frontal horn of the right lateral ventricle, the right foramen of Munro and into the third ventricle. There is a large cavity of the left temporal lobe. The margins of this cavity are irregular with thick enhancing nodules protruding into the cavity. The cavity and its surrounding wall measure about 6cm in diameter. It is especially thick on the medial and superior surfaces of the cavity. The frontal horn of the left lateral ventricle is elevated. There is enhancing tissue extending into the thalamus and posteriorly into the mid brain.”
Therefore, we are perplexed as to why Dani-Ella was not given either a CT scan or an MRI scan with contrast during the period of her admission of 12th November 2005 to 18th November 2005. We feel that this is particularly relevant based on the fact that her medical records state that the Neurosurgical team felt that her deterioration at this time was tumour related and not shunt related. Dani-Ella was discharged without a scan, without a treatment plan and without pain medication.
HERVEY BAY HOSPITAL
Why didn’t Dani-Ella get the local rehabilitation services requested by the Queensland Pediatric Rehabilitation Service (QPRS) when we returned home on 2nd September 2005?
On returning home to Maryborough , we were told by QPRS that weekly therapy sessions would be available to us through Allied Health at Maryborough Base Hospital. In the 5 week period that followed, Dani-Ella received one physiotherapy session, two occupational therapy sessions and no speech therapy. She had received a number of hours of therapy everyday in Brisbane prior to us returning home.
In fact, on 28th September 2005 we were advised that the physiotherapist refused to travel to Maryborough from Hervey Bay to see Dani-Ella as she was her only patient. We were further advised that the speech therapist refused to provide the necessary expressive language therapy Dani-Ella required and on this basis, we were forced to source a private speech therapist ourselves.
Why was Dani-Ella refused a CT Scan for suspected hydrocephalus even though she had a history of craniotomies?
Dani-Ella fell at school and broke her arm, began vomiting and became lethargic in early October 2005. After numerous telephone discussions with QPRS, our QPRS pediatrician referred Dani-Ella to Hervey Bay Hospital for a head CT scan on 18th October 2005. After examination, Dani-Ella was sent home without receiving a CT scan.
We drove Dani-Ella to Brisbane on 20th October 2005 where a head CT scan that night showed acute hydrocephalus. Dani-Ella had emergency surgery late that night to place two external ventricular drains (EVDs) to drain CSF and relieve intracranial pressure as Dr ** thought it too dangerous to leave her overnight.
Thank you for your assistance in relation to this matter. We would appreciate acknowledgement of your receipt of our letter. We look forward to hearing the results of your investigation into our concerns at your earliest convenience.
Monday, January 1, 2007
Hi everyone,
I love this quote I heard by Lucy Swindoll - "Life is hard. Life is wonderful."
Thanks for all the kind messages...we do feel so loved. I don't really have the energy to do this so I'll do a bit now and probably update again later today as there is so much I do want to say.
Today, the first anniversary of Dani's death feels a bit odd. It is just a normal day at home but we don't seem to have the energy to do anything - just sort of moping around, playing with the kids, reading and resting. I think we have made a conscious (but unspoken) decision to remember Dani-Ella in a positive way, talk about her with our children and move forward. Our faith, I believe has enabled us to do this. Our unwavering belief in God's plan for us, we don't understand it, but know there is a plan nonetheless.
I haven't cried today. I sometimes think there is something wrong with me when I read other websites and wonder why I'm not such a mess..all the time. When am I going to have that nervous breakdown? Everyone knows from my previous entries that I have times when the guilt and grief overwhelms me and my heart screams at God "why" but these are few and usually short-lived. I sometimes allow myself the luxury of reminding God that it's not fair that other kids survive malignant high grade tumours when my Dani was taken so quickly and ruthlessly by a benign one..but that is the nature of "the beast" I guess. But then I remember the plan and how many people have been touched by her story. And, through this journey He has remained faithful. He promised us along time ago three children when we didn't think it possible (another story) and He kept that promise, eventhough I really would never had chosen to have a baby at 36. I have also learnt the hard way that when it comes to God's timing "the right thing at the wrong time is wrong" (yet another story).
A few weeks ago I was watching a show on TV that I don't generally watch. The women was in a hospital room surrounded by abandoned and neglected babies. She saw an angel watching over one tiny, little baby and she asked the angel if the baby was going to make it. The angel's reply was that she wasn't meant to make it and that she was meant to go to a better place.
Richard and I watched some video of Dani-Ella late last night when she was a baby and the resemblance to Ellie-Grace just blew us away. It could have been Ellie-Grace in the video except Richard & I looked so much younger!! Or, maybe that is just what we want to see....
We went out to the cemetery this morning and left a heap of pink roses for her out of our garden. It was pouring rain so we sort of had to do staggered trips between the car and her grave with the one umbrella we had in the car.
I also really want to acknowledge all the brave brain tumour warriors who became angels during the year. I am really sorry if I have missed any but have tried to do my best in compiling a list. Say a prayer for their families as they start their first new year without their beloved children:
Dani-Ella
Brooke
Justis
Tommy
Harrison
Hannah
Kieran
Ryan
Trey
Jesse
Timmy
Alexander
James
Kevin
Carlin
Karyna
Patrick
Haley
Christal
Matthew
Kyle
Abbey
Alicia
This email I got from my sister-in-law this morning just really made me smile and want to put it here so that I will always smile when I read it. Melissa writes, "I will never forget her 'haircutting' incident under the bed, the way she was so proud (and rightly so) of spelling o-p-p-o-s-i-t-e, making a paper kite with a paper tail the week after her first surgery and the affectionate way she just climbed into my lap. I will always remember the pillow fighting incident when she told a completely bewildered Caelan off with "I have a brain tumour, you know!", and the way Dan could still tell me the most important things that had happened in her life after her op with Dr Teo. "How are you Dan?" I asked her as I opened the door. With a little smile she pointed to her tooth she had lost and said 'six'."
xxSharon
Wednesday, December 27, 2006 5:16 AM CST
HO, HO, MERRY CHRISTMAS (as Dans would love to say).....
Hoping you all had a lovely Christmas,
Richard, Sharon, Emmelyne, Jaiden & Ellie-Grace
xx
Saturday, December 16, 2006 6:44 AM CST
Hi everyone,
I want to start by thanking everyone who still visits this website and leaves such wonderful supporting messages for us. As grieving parents it means a lot to us to know that you think of us and remember Dani-Ella. When Dani passed away my intention was to continue journaling for a year. This is still my intention so I wanted to let everyone know that around the 1st January I will remove the guestbook. If anyone would like to leave a final message please make sure you do so before then. **I would love it if you would also write about a special memory you have of Dani-Ella** I will leave the website here but will not be updating it regularly. It will remain simply as a tool to hopefully help other families traveling this journey as they battle “the beast”.
Many people have said to me that this must be a difficult time of year. To be quite honest it is no more difficult then the last year without Dani has been, however we do appreciate your thoughts and prayers. I think I am still in a state of numbness to some degree. I don’t really remember much about Dani-Ella’s final weeks. I expect I have subconsciously blocked a lot of the horror of it out. So, I have been able to continue on pretty much as normal…well my new normal. We have put up our tree and our Christmas lights. I love watching the Carols on TV. I look at the approaching anniversary not as one year without her but as one year closer to being with her again. I wish I could tell you that God has revealed to me the reason why Dani-Ella died, but He hasn’t.
As many angel parents will tell you, our living children are the only reason we get out of bed every morning. They didn’t ask for this to happen to them and they need me to continue to be their mum. I am grateful for the support of my family in the last year. It has been a difficult year for my husband and I as we grieve for the same child, but in different ways. Even though I may not say it I know that you are there when I want to talk about things and I can tell you to back-off when I don’t. I have also been thankful for the support of so many friends who also knew and loved Dani-Ella. It is true what is written in “The Gap” (see the guestbook). Some friends and family have been able to walk beside us (never with us) as we walk the path of bereaved parents whilst some have not. Some can not talk about her for whatever reason. Memories are all we have left of her so these people are not really a part of our lives anymore. But, that is ok..that is life. And finally, I would not have gotten through this without my cyber friends. I will never forget any of you or your children.
xxSharon
Sunday, December 3, 2006 7:52 PM CST
Hi everyone,
Well, I made through the ballet concert for another year. As you can tell this becomes a major event in our household with costumes to make (5 this year), a week of nightly rehersals leading up to the concert and then major panic when we realize there are not enough mums backstage to help the girls with all their costume changes for the show. I must say that Emmelyne did dance beautifully this year and didn’t get yelled at by the dance teacher which is always a bonus! We all went to watch the concert on Saturday, including my mum and dad as per usual. Ellie-Grace seemed to enjoy all the colour and lights on stage and sat through most of the concert. It was still hard to watch knowing that one little girl who should be on stage with her friend Emily is not, but we still enjoyed it nonetheless.
Thankyou Jacob’s mum for the beautiful Christmas poem. A timely reminder that Dani is spending Christmas in a better place this year. Please remember with us some other angel families - Henry (a Christmas angel), Harrison, Kieran and Timmy. There are so many more.....
We have approved an angel pin design (www.carlasangels.com) and we are waiting for a picture of the final design to be emailed to us. We decided to do this in honour of Dani-Ella on the first anniversary of her death. I am hoping to upload a picture of the angel pin and the cost on this site when it is finalized. As it is coming from the US, if anyone in Aust wants one please email me and I will do a bulk order to cut down on the international postage.
Well, I must keep going…I feel a lot like the story of the duck. I may look calm on the surface but underneath I am paddling like crazy to keep afloat.
xxSharon
Friday, November 24, 2006 6:15 AM CST
I know I’ve been quiet for a while, so thought I’d better give an update on what we are all up to. Today was our 16th wedding anniversary and 1 year since Dani-Ella had her last surgery so that she could come home to die (also Thanksgiving in the US I believe). So, I am just keeping really busy. That’s the best way I know how to try to escape the guilt and grief. Thankyou Cathie for remembering that it was this week last year when Richard and Dani were in Sydney It means a lot. I think I am still in denial a bit..like I know she is gone but the gone forever and ever part has not really hit yet. And, they say the second year is harder then the first….
This poem was posted on my PBTAngels list:
The Broken Chain
We little knew that morning, that God
was going to call your name.
In life we loved you dearly,
in death we do the same.
It broke our hearts to lose you,
you did not go alone;
For part of us went with you
the day God called you home.
You left us peaceful memories,
your love is still our guide;
and though we cannot see you,
you are always at our side.
Our family chain is broken,
and nothing seems the same;
but as God calls us one by one,
the Chain will link again.
-Author Unknown-
As I said we are all busy with end of school and Christmas “stuff”. Richard and the kids only have a couple of weeks until they break for summer hols. Emmelyne’s dance concert is next week so I am still frantically making costumes. She then only has a week of Year 5 left which ends with a school Mass. She has had her Strings/Band breakup this week and only has a couple of weeks of tennis left this year also. Jaiden had his Year 1 orientation and can’t wait to go to big school next year. He has a preschool graduation and also a party morning where they do a play and Santa comes. Ellie-Grace is being a good girl and going to bed at a decent time and sleeping all night. She quite happily sits in her bouncer for a good length of time and loves “talking” to her bro & sis. As it has started to get quite warm, the kids have been swimming in our pool in the afternoons but it is still too cold for me to get in.
Another mum posted on PBTAngels about an angel pin website which is just beautiful. I’m thinking of getting one…www.carlasangels.com. There have also been some posts on ways on remembering our children at Christmas time. Richard and the kids have decided that Dani-Ella will be an angel on our Christmas tree.
The junior playground at school that has been built this year is now finished and will be named in memory of Dani-Ella. I had to go back to the Year 1 room where she went to school for the first time when I took Jaiden for his orientation. It was difficult for me to physically walk into the room. I have found this happens with a few things like going to the doctors and when I had to have surgery after Ellie was born. It is most likely Post Traumatic Stress…I will deal with that in the new year!
xxSharon
Monday, November 13, 2006 3:26 AM CST
"Do not resent growing old. Many are denied the privilege." - Unknown
Monday, October 30, 2006 0:40 AM CST
I know it’s been a while since I wrote but I’ve been having a mild stress-out. I have tax work sitting waiting for me to do, 5 ballet costumes to sew in the next 3 weeks and a 2 month old baby who thinks sleeping for 1 hour and breastfeeding for the rest of the day is the way things should be!
It’s also starting to get a bit harder as we approach the 1 year anniversary of Dani-Ella’s death. I don’t get any comfort in visiting her grave; it only reminds me of my loss. I have never spent a lot of time at the cemetery, like some mothers who spend days just sitting at their child's grave. I guess it is all tied up in my faith, my strong belief that the body we buried is not really Dani-Ella…she went to heaven. It was “the beast”. I refuse to remember her that way.
It’s hard to believe that exactly 1 year ago Dani-Ella and I were at Ronald McDonald House in Brisbane. We went over to the hospital to get the plaster cast taken off her arm (which she had broken) and get the stitches taken out of her head from having her shunt placed. After Dani-Ella’s surgery on 1st June last year when she sufferred neurological deficits from having a stroke after the surgery, I read a book called “Lessons from my Child” (Dowling, Nicoll & Thomas, 2004, Finch Publishing). One of the stories written called “The woman in the mirror” by Cheryl Veenstra really impacted me because I could have written it. So I thought I would post it as I remember my Dani-Ella of 1 year ago…and continue to think often of all the families who continue to fight “the beast” and the so many tragic stories of childhood cancer I now have read…
I saw an unfamiliar face in the mirror today. She caught my eye as I rushed to start the day. I hardly recognized this woman. What had changed in her eyes? She was no longer young, naïve and viewing the world through rose-tinted glasses. What had caused the worry lines and thoughtful brow? How could she look so fragile and weary, yet also determined and strong?
Around some corner on the road of life she had been shaken to the core of her very being. There was a time when only tears and fears were reflected in those eyes. A doctor’s unexpected words, the future suddenly uncertain…grey, shadowy images of the vague and scary concept of her child coming into the world as “disabled”. An incredible journey began that caught her by surprise and would take her places she thought she would never go. The journey had been long at times and she had shed tears of pain and tears of joy. She’d had hopes and dreams dashed in the blink of an eye. She asked the question, “Why?”.
She’d had friends fail her and not know what to say or how to help. She’d seen her child suffer. She’d cried silent tears into her pillow at night. Tears of exhaustion and fear, tears of hopelessness and longing, tears of thankfulness and relief. Tears that are choked back during the day, but are unleashed like floodwaters in the safety of the night to wash away any walls being built up to protect her heart. Nights of worry blurring into days of endless responsibility. But then slowly, but surely, her broken heart begins to heal and mend.
The same pity she had once felt as she watched a mother hold her “special child” was now looking back at her in the eyes of strangers. But a smile tugs at her lips as she suddenly realizes that now she knew the secret! The hard-fought, carefully guarded secret that was slowly revealed in the depths of her heart…but only after the tears and anguish of the first days and weeks of this new life. The elusive truth that mothers of special children discover as they take their first faltering steps down this new path…it was okay. She and her child could survive, even thrive! It was not as gruelling and unforgiving a road as she had imagined. The fog, confusions, despair and fear were being slowly replaced by peace acceptance, contentment, joy and gratitude. A mother’s unique, unconditional love changes the equation that may look hopeless and tough to those outside, looking in.
She will fight for, live for and die for her child. These special children transform those around them into different people, stronger people. Dare I say it…deeper people! Long gone are the days when all they had to worry about was where to vacation or what colour mini-van to buy. They now struggle with life and death medical issues. They must answer their child’s questions about life’s unfairness and pain. What remaining strength and energy they have is spent trying to make their “family life” as normal and happy as possible.
A twinkle returns to the eyes of the woman in the mirror as she takes a deep breath and remembers what she’s been fighting for. How very worthwhile this journey has been! This child is an incredible gift and it is privilege to be given the task of raising her. Her child is beautiful and perfect in her eyes. She longs for her child to be seen by the world through this filter of love, acceptance and potential. Could others take the time to see past this little girl’s slower steps to see the life and love reflected in her eyes? Would her child be able to see herself through the filter of contentment that the woman has journeyed so long to discover?
Hope was rekindled as the woman’s eyes grew brighter. The future remained uncertain, but the incredible, protective love she felt for her child threw a warm blanket over the cold, dark storm clouds that once threatened her very soul. As she threw open the doors of her heart, she felt the warm sun on her face and she beheld a beautiful rainbow of intense beauty and unmistakable peace. Hope still comforts this woman who cries in the middle of the night. Love gets her through each day. Faith takes her hand and leads her around each corner and through each deep, dark valley. Peace soothes her heart as she relinquishes control of their destiny to the One wiser and all knowing. Joy brings laughter and smiles to those tired eyes once again. Each day is recognized for the gift it is.
I gave the woman a smile as I left her at the mirror today. I’ll see her again soon, and I’m curious to see how she will continue to change and grow. She’s not the same young, carefree woman she used to be, but that is okay. I like who she is becoming and I feel comfortable in her life. The sun is shining, the day is brand new, my child is humming and God is so good!
xxSharon
Saturday, October 7, 2006 1:23 AM CDT
I’m writing this journal from Woodgate beach where we are having our annual week’s holiday. It’s lovely and warm and great for swimming at the beach. Richard has taken Emmelyne & Jaiden fishing (I’m hoping for fresh fish for dinner but not holding my breath!) and Ellie-Grace is asleep. If you had told me when we were here this time last year that on our return Dani-Ella would be dead and we would have a new baby I would have thought you totally crazy. Just goes to show that you never know which path your life will take.
I have been doing a little more research lately after reading a post on the PBT list from my friend Celeste whose little 2yo girl Valerie Grace has a BT. As you can imagine there is a lot of discussion on these lists about what causes BTs and what we as parents did wrong that our children would get a BT. Of course, we did nothing wrong! When they removed a big chunk of Valerie’s tumour they started growing it. Celeste was told that Valerie’s tumour like most other childhood brain tumours are the result of stem cell diseases. So, this means that most PBTs are genetic but not hereditary (except for NF) ie. when the first cells are dividing they just weren’t programmed right. So, as Celeste explained to me Valerie’s stem cells are programmed to produce extra cells in that part of the brain. This obviously is an area of ongoing research but something I found interesting in trying to understand why Dani-Ella’s tumour grew back so quickly.
Eventhough it has only been 9 months since Dani-Ella left us I do feel happy and thankful. It is true that if you can just get through the next minute, the next hour…just breathe…things will eventually get better. This is why I have had to be selfish and make sure that I’m ok, my kids are ok and my husband is ok. Some days just breathing is sooo exhausting. I don’t have any energy left to worry about other people. I just need to do what I need to do in my own time, without rushing here and there…I just can’t cope with rushing around anymore. That is a skill I will have to re-learn.
It is hard for me to explain how I can feel so happy and yet heartbroken at the same time. I delight proudly in everything my kids achieve and yet silently mourn the fact that I will never see Dani-Ella achieve these same milestones. As I read on another website (www.leahsjourney.com/whattosay), it’s not like a cut…it’s more like losing a leg and trying to live without it. I will never get over losing my child but I am learning to live without her.
Sunday, September 24, 2006 2:16 AM CDT
Sunday, September 10, 2006 6:12 AM CDT
We arrived home from hospital this afternoon with our new little girl. She was born Wednesday night at the Nambour Selangor Private Hospital weighing 4460grams or 10lb 1oz.
Her name is Ellie-Grace.
We are all doing well.
xxRichard & Sharon
Thursday, August 31, 2006 1:21 AM CDT
Hi Everyone,
I’m still in one piece and wanted to continue on with Dani-Ella’s story. We first found her tumour after she started having simple partial seizures in April 2004 and these did not stop until her surgery in Sydney on 1 June 2005.
From September 2004 to December 2004, Dani-Ella continued to have a couple of seizures a week. She could usually feel a seizure coming on (called an aura) and she would tell me “I’m having a black”. When it finished (usually 30 – 60 secs) she would tell us. She was on Tegretol during this time which we periodically increased the dose of until she was at the max dose per kg. Dani-Ella was rarely at the therapeutic level with the Tegretol however, pushing anymore than this would just make her sleepy. Around mid-December the seizures started to become more frequent and Dr Appleton suggested we add another anti-convulsant called Lamictal. Again I was very upset as I didn’t want to get on the medication round-a-bout but it seemed inevitable that we were about to jump on. Controlling seizures is a lot about trial and error and you generally have to try different drugs and different combinations of drugs to get the right ones. Starting Dani-Ella on Lamictal proved a huge mistake. The seizures continued increasing in frequency, she began vomiting after having the seizures around Christmas time and on Boxing Day I took her to the Hervey Bay Hospital as she was having seizures every 10 minutes. She wasn’t admitted to hospital so the next day I had to take her to Maryborough Hospital for rectal Valium as the seizures had not abated.
At 6am on 29th December 2004, I phoned Dr Appleton as she was still having seizures. He told me to give her another dose of Valium and come straight down to RCH where she would be admitted. I believe she went into status epilepticus as we were packing up this morning. This is a prolonged seizure. When she didn’t come out of the seizure after 30 mins I gave her some more Valium. We drove the 3 hours to the hospital (with lots of seizures and lots of vomiting in the car) and Dani-Ella was admitted. Dr Appleton immediately ceased the Lamictal and started her on Topomax sprinkles. She was given buccal Midazolam and we were relieved when she finally stopped fitting and went to sleep. However, the seizures started up again when she awoke. By 1st January 2005 she was now getting about 30 mins between seizures but still needed lots of Midazolam for some relief. Eventhough she was having fewer seizures, she was very lethargic and tired and had no appetite. She was continuing to vomit with the seizures also. Dr Appleton wanted to do an EEG before we left hospital so we had to stay in Brisbane until 4th January 2005 when an EEG could be scheduled at the Neurosciences dept. Dr Appleton was happy with the EEG and said we could go home as long as I continually phoned him with reports on how she was going. He told me at this point that he probably couldn’t stop the seizures altogether put hopefully reduce the number of seizures so that they weren’t impacting too much on her ability to function.
I think I can safely say that the seizures were the most devastating symptom of Dani’s brain tumour. PXAs commonly first present with seizures. It was not the physical side of seizures that was challenging…it was the emotional side. The constant, unrelenting worry about the “next” seizure. You never knew when it is going to happen or where. Dani-Ella would have seizures at school, at ballet lessons, at swimming lessons, at the shop, at church… As one mother writes “There is nothing quite so heartbreaking as telling people that your child has epilepsy and seeing their reaction. You might as well have told them that you have just given them the Ebola virus”.
Throughout January 2005, Dani-Ella continued to lose a lot of weight. She dropped to around 15 or 16 kgs and was wearing size 4 clothes that just hung on her. On a good day she would have maybe 4 – 6 seizures and on a bad day she would have up to 12 per day. I phoned Dr Appleton on 18th February 2005 to tell him how concerned we were with Dani’s weight loss after she had lost another 1.5kg in a couple of weeks. We decided to reduce the Topomax and check her Tegretol level (this is done by blood test). I again harassed him about a possible surgery in the hope it would help with the seizures. His answer was “maybe”.
As Dani-Ella’s seizures again started increasing in frequency we started yet another anti-convulsant called Keppra whilst weaning her off the Topomax. We just could not live with the massive weight loss it was causing. It was around this time that I heard that people were being told to pray for Dani-Ella’s liver. I mention this now because it was very upsetting to us that people were being told this when we had not asked for it – we were actually more concerned about the tumour in her brain..ok that was written sarcastically. We also knew from our research that the Tegretol was metabolized through her liver but that the Keppra was metabolized through her kidneys.
I will forever remember the efforts of her teachers – Mrs Rosin and Mrs Elmer and St Mary’s Primary School for letting her attend school and join in with her friends even though she was having so many seizures. Her Year 1 class though seemed to take her seizures in their stride, and we are also grateful to the support given to Dani-Ella by the families of her classmates. It still upsets me that you didn’t know Dani-Ella beforehand. You only knew her after the “nasty little bugger” (a name I quite like that I have stolen from someone else on the OzBrain tumour list) had invaded her and she needed to be doped up to her eyeballs on anti-convulsants.
xxSharon
Friday, August 18, 2006 10:05 PM CDT
Thankyou everyone who sent us cards and flowers or brought balloons, flowers and gifts to the cemetery last week for Dani-Ella's birthday. Also, thanks to my friends who left messages on the guest book. I wanted to post again my favourite quote by Helen Keller as I think it is very appropriate -
It gives me a deep comforting sense that things seen are temporal and things unseen are eternal.
We continue to feel very supported and it does help us alot to know Dani-Ella is remembered...that her 6 short years on this earth touched the people who knew her.
It has been an interesting week for us as I enter my 38th week of pregnancy. After Dani's birthday and a very busy weekend of parties and hockey games both Sat and Sun, "nesting" hit with a vengence on Monday and I have been cleaning and washing everything in sight. I am also doing weekly trips to see my doc in either Gympie or Nambour which I am finding quite exhausting.
Jaiden managed to christen the new St Mary's playground on Tuesday arvo resulting in a trip up to the hospital for a busted chin. He almost reached 5 yo (for all my US friends he is a 9/11 baby) without breaking anything or requiring stitches which is pretty amazing!
I did what our family calls "a Faye" on Wednesday (hi mum) by falling over at the shop and twisting my ankle. After a teary phone call to my husband at work (I think I was in a bit of shock) I got home, lay down and iced my ankle. Being the first aide guru of the family, Richard strapped it for 24hrs and it was fine.
I also received a phone call from the Executive at the Royal Children's Hospital in Brisbane concerning the 8 page letter I sent about Dani's treatment. He has spoken to all the Consultants involved and wants us to go down for a round the table discussion of Dani's illness due to the complexity of her case. We are glad that action is being taken but are scared they will all gang up on us. Dr Vonau (our female Neurosurgeon) really intimidates me. When I told my sister she said to me she has never seen me intimidated by anyone ever except for this doctor. We also feel that we know enough about Dani's illness (I have spent 2 years of my life finding out everything I can about brain tumours) - it is the concerns we raised about her treatment that we want to discuss and we don't know how willing they will be to do this. Anyway, the Executive was very nice and told us everyone was quite distressed over her death as she was such a beautiful little girl but it has been a bit unsettling for us, particularly as we try to prepare for the birth of another child.
xxSharon
Saturday, August 12, 2006 1:19 AM CDT
Hi everyone
I am physically and emotionally exhausted but just wanted to thank everyone and post this picture of all the balloons placed at the cemetery for Dani-Ella's birthday.
Saturday, July 29, 2006 11:00 PM CDT
***** DANI-ELLA'S BIRTHDAY *****
It's Dani-Ella's birthday on Friday 11th August.
We would like to invite any of her friends to come and leave a balloon for her at the Maryborough Garden of Rest Cemetery around 4pm.
Richard has made a little pink cross to mark her grave and we will leave some stakes in the ground where you can tie the balloons.
We hope you will join us.
Dani's 1st Birthday
Dani's 2nd Birthday
Dani's 3rd Birthday
Dani's 4th Birthday
Dani's 5th Birthday
Dani's 6th Birthday
Wednesday, July 26, 2006 11:26 PM CDT
I had a look at my last journal where I set out all the cold, hard medical facts of Dani-Ella’s MRI scans. It hit me that I didn’t express the emotional side attached to taking your 5yo daughter for regular scans. As Richard is a manual arts teacher, the responsibility for attending MRI scans fell to me alone due to the risk of Richard having metal shavings in his eyes from welding, etc. MRI scans for us meant a 3 day visit to Brisbane (approx 3 hour drive away), organizing my parents to come and stay in Maryborough for those 3 days and a stay at Ronald McDonald House for me and Dani. I would schedule the scan for late Wednesday afternoon and then we would have to wait until the neurosurgical clinic on Friday morning for the results.
The whole drama would start with trying to schedule the appointments. Dani-Ella did her scans without sedation. This was more of an economic and practical consideration then anything else as usually 5 yos would have a general anesthetic for a MRI scan as they have to stay completely still for such a long time. However, MRI scans under a GA were booked up around 4 months in advance at the Royal Children’s Hospital and Dani-Ella required a scan every 2 months. We would arrive at the MRI dept approx 1 hour before her scan was scheduled. This was because she always had contrast MRI scans which involved injecting the contrast into a vein in her arm via a cannula about half way through the scan. The numbing cream (Emla) they applied to her arms took an hour to work and believe me it was not pretty without Emla.
Before we were allowed to enter the MRI room I had to sign all the usual consents but for both myself and Dani as I was in the room with her during the scan. We had to remove anything metal, jewellery, credit cards, etc as all these things were affected by the MRI machine. One time, the nurse accompanying us into the scanning room had a pair of scissors in her pocket. As soon as she got within a few metres of the machine they flew out of her pocket and stuck onto the scanner…very dangerous.
Dani-Ella was strapped onto the table with pinky under one arm and her head was locked into a helmet so she couldn’t move. We also had to wear earphones as the scanner is very noisy – lots of clicking and banging noises. Dani would slide into the scanner and I would sit at the end of the table she was lying on so I could tell her to keep still, etc. She was very good to stay so still and occasionally would even fall asleep during the scan. Dani-Ella was always SO good. She never really fussed about the horrible things the docs did to her. It was only a couple of times they had to repeat a particular scan series because she had wriggled.
We do have private health insurance so I did check into having her scans done privately at the Mater Private X-ray in Brisbane, however;
• MRI scans are very expensive, particularly when you have to pay an anesthetist as well. We did have Dani-Ella’s first MRI scan done at the Mater and it cost us out-of-pocket (after medicare rebates) around $700.
• Medicare will only rebate 1 MRI scan per year. That means that you have to pay 100 he cost of the scan – you do not get any refunds from Medicare after the first one in the year. Dani-Ella needed a scan every 2 months.
• MRI scans are done as out-patient only. This means that the scan is not covered by private health insurance which can only be used for in-hospital treatment.
This is very usual of the situation we found ourselves in during Dani-Ella’s illness – at the mercy of Qld Health and the public hospital system.
xxSharon
Monday, July 24, 2006 5:12 AM CDT
I wanted to continue with Dani-Ella’s story.
We phoned Oncology outpatients on the morning of Tuesday 10th August 2004 which was 1 week after her surgery and were told that Dr Tim Hassall would see us around 3pm that afternoon. We were still waiting on the final pathology results which would determine what further treatment Dani would need. We went up to see him and I have to tell you that the pediatric Oncology ward was the scariest place I have ever had to go. I hope that you never have to go there. We waited for quite a while and Dr Appleton came by while we were sitting there. He did some neuro tests on Dani-Ella and confirmed what we believed – she had suffered no neuro deficits from the disaster they called surgery except a small weakness on the right side of her mouth (this was barely noticeable but sometimes she would have a bit of a crooked smile). We then went in to talk to Dr Hassall and he explained that the pathology had come back as a PXA which was a Grade II astrocytoma. Therefore, because it was considered a benign tumour she didn’t need any chemotherapy or radiation and she would be put on watch and wait with MRI scans every 2 months. We immediately left to drive home that night (in a state of extreme relief) as it was Dani-Ella’s 5th birthday the next day. Dani-Ella was able to have a lovely birthday party at preschool the next day with her favourite Disney Princesses cake.
Dani-Ella continued to recover really well from her ordeal and we returned to RCH for a follow-up visit with the neurosurgeon on Friday 20th August. She returned to preschool the following week. Dani-Ella had her first seizure after surgery on the 13th September 2004, after she stopped the dexamethasone. This for Richard and I was devastating. Thus began many months of MRI scans and seizures.
I will summarise the MRI scans firstly as the following is an extract from the letter I recently sent to RCH. Remember, the original MRI scan prior to surgery in July 2004 indicated a lesion of 3cm:
"The MRI report on 22nd September 2004 states “transverse diameter of the tumour in T2 is measured at 4.4cm x 3.7cm” and “cystic changes are more prominent” and “size of lesion appears to be slightly increased”. Dr W at a clinic appointment on 24th September 2004 told us the tumour was substantially unchanged and on this basis recommended that any further surgery be postponed.
The MRI report on 1st December 2004 states “the abnormal signal measures 5.3cm x 4cm at its maximal transverse diameter on T2 weighted images”. Again, at our clinic appointment with Dr W on 3rd December 2004 we were told the tumour was “stable”. We told him that Dani-Ella was having ongoing speech issues, we noticed her seizures were increasing in frequency and she seemed to be having eye problems (rubbing and squinting her eyes). At this clinic appointment we also asked for a referral for Gamma Knife treatment in the UK. We were very surprised when Dr W advised us that Dani-Ella’s tumour was too large to be considered for this treatment option. We believed that her tumour was still 3cm as per the original scan as we had been told it was not growing.
Dani-Ella’s next MRI scan was on 30th March 2005. At a clinic appointment with Dr V on 1st April 2005 we were told the tumour was substantially unchanged. We have not retained a copy of this MRI scan and as such do not have a record on the tumors actual measurements. We advised Dr V that we believed Dani-Ella’s seizures were now uncontrolled by medication, she was having memory problems, we noticed a worsening droop to the right side of her face and thought she had developed a head tilt.
On 1st April 2005, we were not offered another surgery at your hospital as:
• Dr V would not be able to achieve a gross total resection and did not want to operate due to the risk of neurological deficits; and
• Your hospital lacked the necessary operating equipment to perform the surgery.
As a result of this clinic appointment, we sought immediate private treatment in NSW. The tumour removed during Dani-Ella’s surgery on 1st June 2005 as per the pathology report measured 6cm in aggregate."
Another issue I have raised with the RCH is the difficulty we had in getting information about Dani-Ella's disease:
"On 29th September 2004, we had a phone discussion with Dr A. During this conversation we made a request to attend the whole team meeting we knew was held weekly so that we could hear all the opinions about Dani-Ella’s case. We were told we would not be allowed to be present at such a meeting.
In hindsight, we feel we were making decisions concerning her treatment without all the relevant information from all doctors. It would have been helpful for us to be allowed to listen to the opinions of various Specialists as they discussed her case after each MRI scan.
After Dani-Ella’s original surgery at RCH, Brisbane we were told that a PXA was a “good” tumour to have. However, our discussions with a Neuro-pathologist at a large teaching hospital would indicate that PXAs are rare tumours and are relatively new as a classification. As such, they are really not well understood in terms of prognosis, behaviour, recurrence, etc. With tumour types that are better understood there is more research linking the pathology to the prognosis but this is really not the case with PXAs.
We were never formally advised of the decisions arrived at during these tumour board meetings. Dani-Ella’s MRI scan was usually on a Wednesday, her clinic appointment with the Neurosurgeon was on the Friday and the meeting was not until the following Monday.
We would have appreciated a written summary of the decisions made about our daughter’s care, along with details of any dissenting opinions at this time."
Anyway, this has turned into a huge journal and I will talk about her seizures next time.
xxSharon
Tuesday, July 18, 2006 1:53 AM CDT
Sorry it’s taken so long for an update. We arrived home late last Monday night and everyone was back at school on Tuesday. I also came down with the flu Tuesday so it’s taken a while to get unpacked and back into some type of normal routine. I also wanted to say that I did not send anyone postcards so if you were feeling a bit offended because you didn’t get one..no one did. BTW, we did go to the Cadbury Choc Factory and we are still enjoying our purchases.
While we were away the 6 month anniversary of Dani-Ella’s death passed by. We have learnt the hard way how important the time you have with your kids is. We would give anything to have had more time with Dani-Ella but our last gift to her was letting her die peacefully at home without fear of painful treatments and invasive procedures that may have prolonged her life, for our benefit. It has been difficult for me to embrace people who do not put such a priority on family. I had hoped that tolerance would be a lesson I would learn through this but must say that while I am more tolerant, kind and compassionate in some areas, I am more inflexible, angry and selfish in others (just ask my husband who cops the brunt of my tirades). I am not inclined to be considerate of people who I don’t feel have been able to support me or my husband during this most difficult time in our life. Conversely, there are other people who will forever be remembered and treasured.
Obviously, I am using this journal as a tool to express my grief but also find reading immensely helpful. While we were in Sydney my friend Cathie lent me a book called “Can I take my Panda, Daddy? by Greg Crooks. It is the Australian story of a 4 yo boy’s death from a brain stem glioma as written by his father. I encourage anyone to purchase a copy (www.boolarongpress.com.au). There are 2 extracts that were particularly relevant for me:
Pg 84 – “All this thinking, all this worrying is tiring. The PICU doctors and nurses don’t tell us much. They never relate the results of the many blood tests and x-rays. They never tell us when or why Sean is commencing a new drug. They never let on what they are thinking. I try to read expressions. Like the average person, I should ask questions but don’t.”
Pg 101 – “I have learnt of husbands who live hundreds of kms away; of siblings temporarily enrolled in local schools; of children left behind with grandparents; of lost careers; of shuttered businesses. I have learnt that all parents do as we have done when a child is gravely ill. They drop everything and instantly prioritise. They mortgage houses. They become their child’s advocate and protector. They become accepting of and conversely wary of doctors and medicine. They learn how not to cry in public and they learn how to cry when alone.”
I have also today posted a "letter of questions" to the Director of Royal Children's Hospital. This started as more of a therapy for me to actually write down the unanswered questions we had about Dani-Ella's treatment in Brisbane. I still feel the heavy weight of guilt as my momma gut was screaming at me that her treatment wasn't appropriate..but I ignored it. I also feel guilty because I have a diary entry on 6th October 2004 where I have written down Dr Charlie Teo's address and phone numbers. However, our fear meant we didn't take Dani-Ella to see him until 5th April 2005 - 6 months later. This delay was obviously critical in terms of her long-term survival and something I will have to live with for the rest of my life. I hope that our story shows the importance of getting a second opinion..or third or fourth.
xxSharon
Monday, July 10, 2006 10:40 PM CDT
Hi everyone,
We are home!! We got home late Monday night (it is so nice to be back in Qld) after 5 weeks away. We had a good trip - however it was freezing cold, raining and there was NO snow to be found.
xxSharon
Thursday, June 1, 2006 1:36 AM CDT
Hi everyone,
Just a short journal today..wanted to somehow acknowledge the 1 year anniversary of Dani-Ella's surgery in Sydney. It's ironic that we leave to go to Sydney again on Sunday. We are going on a 5 week trip and are not taking our computer so can't guarantee updates. We are doing a trip to Tasmania to see the snow in Dani-Ella's memory. My brother-in-law Nev organised a plaque for us to take to nail on a tree the first time we see snow -
Dani-Ella Rose Jack
11/8/99 - 1/1/06
Forever 6
Her wish was to see snow
We miss you Princess
To all my friends, I will be sure to think of you all and eat a piece of chocolate for each of you at the Cadbury factory! Just as well I'm pregnant and have an excuse for getting fat.
We were also pleasantly surprised to have Dani-Ella's medical records turn up in the post a couple of days ago. Most of the info in the notes and reports we were aware of. I have now finalised a letter of questions to the Executive Director of the RCH, Brisbane which we will post off shortly...it's 7 pages long so don't expect a quick reply.
Just wanted to share one thing my incredibly smart 9 yo daughter said to me this week. We were mucking around saying who is luckier..."such and such" family or our family...and I said we are because we have a swimming pool...and Emmelyne said I think "such and such" family are because they have all their family members and we don't.
I went to visit our GP - the same doc who did Dani-Ella's palliative care. He reminded me of a couple of incidents that he witnessed at our home in the last week of her life and I wanted to write about them. I have become so caught up in the what ifs, etc that the happy memories got pushed aside. He would visit most days to check that we were going ok. One afternoon he visited to find Dani-Ella sitting on Richard's lap by the pool happily splashing her feet in the water. He said it was such a poignant moment for him as a father. Another time he was trying to examine Dani-Ella and she said to him crossly "I can't see". He thought to himself oh no what's happening now and then realised he was blocking her view of the tv! Another evening he came to visit and Dani-Ella wasn't here. Richard and his brother were taking the kids to get some McDonalds and there was no way Dani-Ella was staying home and missing out on that. So I guess what he was trying to say to me was that Dani-Ella had quality of life right up to the end.
xxSharon
Friday, May 26, 2006 4:52 AM CDT
I’ve been struggling again with the thoughts of “did we do the right thing” when we were told we only had a short time left with Dani-Ella (I know I am continually repeating myself on this issue but I still go round and round in my head about what I could have done differently). We were given 3 options: the one we chose which was to bring her home on palliative care and one was to take her directly to Brisbane for intensive chemo. I have had the opportunity to read what other parents have written about their last days with their BT children. It seems to me that no matter which path you choose, you will have “what if” questions and regrets. I have never said that there is a right and wrong path to choose, only that you must choose the path that is right for your family and the one that you think is the path of LEAST regrets. I feel that having Dani-Ella at home in those final weeks was the best choice for her. She needed to be in her own bed, with her family where we could tell her how much we loved her and where we could keep her safe and comfortable. I guess I feel compelled to journal this again because of a dream I had. I dreamt that we choose instead to take Dani-Ella to hospital and she died alone..she wasn’t cured and she never came home again. However silly it may seem, I’m taking this as a sign that we did the right thing!
After Dani-Ella died, within a month I had packed up her things and given them to charity, passed her toys around to her friends as keepsakes, etc. There are some things though that I haven’t been able to do: I haven’t taken off my grey brain tumour awareness wrist band, I hadn’t changed the sheets/pillows/quilt on Dani-Ella’s bed and we do not yet feel up to having people/family stay in our home with us. Well, on Monday we had to move Dani’s bed into Jaiden’s room. This was very traumatic for us as it was so final to move her bed out of the room beside ours. We also have one of her guardian angels pined to each of our handbags/school bags. I guess this makes us all feel that she is close to us.
It was cross country at school yesterday. I can’t believe that 12 months ago Dani-Ella was there running the cross country. I was up at school to watch Emmelyne run and want to say what a joy it is to me when parents tell me of the way their children remember Dani-Ella.
The day after Dani-Ella was diagnosed I began my internet research into brain tumours…lets just say it wasn’t very encouraging with information like the average life span after diagnosis is 7 years. The original radiology report said that it looked like a low grade astrocytoma so I was at least able to start looking in the right direction. After her surgery and we knew it was a PXA, I found Kieran’s web page. This was the only other child in the world I was able to find with the same tumour as Dani-Ella’s. However, his tumour had changed to an AA3. The other person I have “met” with a PXA is Jessica and her tumour too was changed to an AA3.
When we went to Brisbane for Dani-Ella’s first surgery, we were able to get a room at Ronald McDonald House arriving Sunday night – 1st August 2004. This was again very unsettling for me as RMH can’t confirm a booking until a day or two before you are due to arrive..I like to be organized and prepared! Richard, Dani-Ella & I left Maryborough after church on Sunday, leaving our other children at home with my mum & dad. Dani-Ella was admitted to McConnell ward on Monday and we spent the afternoon sitting in the ophthalmology and audiology clinics. Her tests came back normal. We had a visit from the Neurosurgical Registrar with the consent forms for Dani-Ella’s surgery which listed the possible side effects of surgery as death, paralysis, blindness, etc. I made Richard sign them. We also had to talk with the Anesthetist Registrar. Dani-Ella went down to surgery at 8.30am on Tuesday 3rd August 2004. As only one parent was able to go into the operating theatre, I let Richard carry her in and hold her until she fell asleep. This turned out to be a good choice on my part as Dani-Ella was cranky with Richard when she woke up and wouldn’t talk to him for a day or two! Around 1 or 2pm we were sitting in the McConnell parents lounge waiting for news when Dr Vonau and her Registrar arrived. She sat down and said “unfortunately the surgery didn’t go as planned”. She continued to tell us that the tumour was peeling away nicely until suddenly her left internal carotid artery burst. Dr Vonau said that the blood vessel was not in the right place and it was not normal looking. They had to sacrifice the artery by clipping it off in order to stop her bleeding to death. Basically she said that Dani-Ella is alive but they didn’t know what she would be like when she woke up. She could have brain damage or a stroke. They were hoping that the right side of the brain would compensate and supply blood to the left side, however, they didn’t know for sure if this would happen. (We later chatted to Dr Vonau’s Registrar who told us it got very “scary” in the operating theatre and they had to call in another Neurosurgeon – Dr David Walker, to assist) Dr Vonau told us Dani was down in PICU and we could go down and see her. When she left Richard and I just cried..the Parent’s Lounge cleared out very quickly.
After a couple of minutes we raced down to the PICU which was on a different floor to the ward. As they were still settling her in intensive care we had to wait outside until they were ready. When they let us in Dani-Ella was just waking up from the anesthetic and we noticed she was clicking her fingers. Richard & I looked at each other and announced to all the nurses and doctors that she was fine (she had just learned to click her fingers). A little while later the Social Worker showed up and we were forced to go with him for a “chat”. Apparently, if you enter the PICU crying you automatically get reported to the Social Worker. I was definitely unimpressed and once we explained to him what we had been told, he was fine and let us go back to see Dani-Ella (I later read in Dani's file what the social worker had written about our meeting - he noted that we had been "severely traumatised"). The PICU doc who reported me got a number of dirty looks every time I entered intensive care! (Richard thought this quite funny.)
We were very disappointed to learn that only a very small piece of Dani-Ella’s tumour was removed. Once they got the bleeding under control they decided it was too dangerous to proceed with the resection. All that was taken was enough for a biopsy and it was only taken from around the optic nerve. Dani-Ella recovered from her surgery quickly and was taken back down to McConnell ward the next day. She had a CT scan before being discharged from the PICU. I went in with her during the scan and the radiologist must have seen how nervous I was as she gave me the “thumbs up” as soon as the scan was finished. There was no bleed but still lots of tumour left. Dani-Ella was allowed to leave hospital on Saturday 7th August as long as we stayed at RMH for a few more days. We were scheduled at appointment with Oncology outpatients for pathology results and further treatment options for the next Tuesday.
xxSharon
Thursday, May 18, 2006 1:38 AM CDT
I would like to thank the person who posted the Mother’s day poem..it was really beautiful. If you haven’t read it go and have a look in the guestbook.
We are doing well..the kids are happy and Richard and I are keeping busy. We are excited about our trip which is now less than 3 weeks away. We will be gone for 5 weeks and are looking forward to visiting all our friends on our way south.
Two years ago little did we know that our life as we knew it was about to change forever. Dani-Ella had her first “turn” on 10th April – Easter Saturday. We were staying with Mum and Dad at the Sunshine Coast when Dani suddenly dropped to the ground and appeared dazed. She was unresponsive and her lips turned blue. The episode only lasted less than a minute and then she slept for a couple of hours. We didn’t think this was serious and left the girls with Mum and Dad to stay for the next few days. Dad told us that he thought Dani had another turn on the next Thursday. We had never seen anything like this before but had previously commented between ourselves that she sometimes was a bit vague and off with the fairies. We had also been concerned with her speech development and had her assessed by the time she turned 3 years old. She had done a few blocks of speech therapy but by Year 1 was pretty average (ie. in her teacher’s words she wasn’t the best but she wasn’t the worse either). We had also noticed that her eyes were really sensitive to light and particularly in the sun she would squint and cover her eyes..most photos have her eyes closed!
Dani-Ella had also sufferred from tonsillitis from around her 2nd birthday. In the year that she was at Kindy she was having bouts of tonsillitis almost monthly and eventually our GP referred us to an ENT. The ENT was happy to remove her tonsils and adenoids in December 2003. I think that the constant tonsillitis probably masked other symptoms and our focus that year was on sorting out the tonsillitis. She began Preschool in January 2004 and her preschool teacher never mentioned to us that she had seen any of the fits or turns that we had started to notice.
The next episode occurred in the evening of 27th May. We started getting a bit worried now and took her to see our GP the next morning. He was a young doc so after conferring with Dr Cotton decided to do some blood tests and give us a referral to see a Pediatric Neurologist in Brisbane. This appointment, along with an EEG was scheduled for 5th July 2004. Dani-Ella had a couple more fits (that we saw) before that appointment. One on 2nd June whilst walking home from Preschool and one on 18th June whilst at gymnastics. These consisted of being “absent” for about 30 seconds, some eye flickering and chewing movements with her mouth.
I took Dani-Ella to see Dr Appleton in Brisbane and scheduled an EEG in his private rooms immediately before our appointment with him. The EEG showed “some focal higher voltage slow activity in the left posterior region”. After detailed neurological testing he diagnosed “simple partial seizures”. He prescribed a low dose of tegretol (an anti-convulsant) and suggested an MRI scan to see if there were any underlying reasons for the seizures. We were devastated that our little 4 year old daughter had epilepsy. Little did we know that just a month later we would wish that was what it was.
When I got home from the Neurologist appointment (3 hour drive) I told Richard what he said and we decided that we would start the medication and we would agree to an MRI scan. I booked an MRI scan at the Mater Private Hospital in Brisbane on 22nd July 2004. Dani and I caught the tilt train to Brisbane and stayed overnight at Ronald McDonald House. While we were waiting for the results of the MRI, we sat outside at Ronald McDonald House and Dani-Ella played on the playground. There was another younger child also playing who had a stuffed animal with her. After a few minutes of playing together the other child gave Dani the stuffed animal to hold. The mother exclaimed to me in surprise that the child never let anyone else touch the toy let alone gave it to someone else. That just about sums up the effect our girl had on others..they instantly fell in love with her.
We were due to go home on the tilt train late on 22nd July. Dani-Ella had to have a GA for the MRI scan and afterwards I thought it a little strange when the anesthetist said to me that Dr Appleton will probably want to see me before we go home. When Dr Appleton received the report he phoned me on my mobile to say that they had found something on the scan and could I come to his rooms. Mum and Dad came to pick me up from Ronald McDonald House around lunchtime and took me into Wickham Tce to see the doctor. Dr Appleton had not actually received the hard copy of the scans but gave me a copy of the radiology report which had been faxed over to him. He said he would present Dani-Ella’s case to the neurosurgical team at their Monday meeting and someone would call me. Mum and Dad then dropped me at Roma St train station and me and Dani caught the tilt train home.
I remember when we got home and the kids were in bed I said to Richard that Dani-Ella was going to die. I think that God started preparing me even from this time for her death, I always had that terrible sick feeling in the pit of my stomach everytime she had a test or we spoke to a doc and was very unsettled about her early treatment (NOTE - don't ever ignore the momma gut feeling). It was also from this early stage of diagnosis that I asked God to be merciful and take her quickly if He wasn’t going to heal her. Don’t get me wrong, we still prayed and believed that she would be healed. We spoke words of faith, clung to Psalm 91 and asked anyone we could find to pray for her.
I think it was the next Monday that Dr Appleton phoned me. He told me the team had looked at the scans and unfortunately it wasn’t going to be as easy as they had hoped. The scan basically showed a 3cm lesion in her left temporal lobe and hippocampus which they thought looked like a benign tumour. He told me that the neurosurgeon would phone me and let me know when surgery was scheduled. I asked him some questions including “is surgery our best option?” – his reply was “we don’t have much choice” and “is the neurosurgeon experienced” – his reply “she is very experienced and has recently come up from Sydney”. I accepted his assurances. The neurosurgeon did phone me the next day, which was Tuesday 27th July 2004 and spoke briefly about the surgery which she had scheduled for the next Thursday - the 3rd August. She told me that she didn’t think she would be able to get all of the tumour out but would debulk it. Dani would be admitted to McConnell ward the day before as she would need have a hearing test and see the ophthalmologist prior to surgery...just standard practice to get baselines I was told.
I received a phone call the next day, which was Wednesday 28th July around 6pm from radiology telling me that I had to be in Brisbane with Dani-Ella the next morning at 8.45am for another MRI scan to place "lifesavers" on her head. If she didn't have this scan then she wouldn't be able to have the surgery. I have to admit I was a nervous wreck after this phone call - I had a 3 hour drive to Brisbane for the scan and 2 other children (a 7yo and a 2yo) to organise.
xxSharon
Wednesday, May 10, 2006 7:51 PM CDT
This is a bit more of a technical entry as I have been doing lots of reading this week and going over Dani-Ella's radiology reports. I obviously didn't read them real well the first time because I honestly have been shocked at some of the information I have learned from them..information that we were never told and I would never know if I didn't get a copy of the reports.
I know more about brain tumours now then I ever would want to know and this week have learned more about the neuropathology of PXAs then I ever would want to know too. I agree that everything in the pathology report as well as the position of the tumour, etc would indicate a PXA. The one thing that would confirm Dani-Ella's tumour was a PXA is called a GFAP test which is a immunohistochemical method of differentiating PXA from other tumours which could otherwise be incorrectly classified as a PXA. Unfortunately, I have no evidence of this test being performed (hopefully something will be in her medical records)...the more I think about it and search for answers, the more questions I have. You may ask what the significance of this is. Our treatment decisions were made of the basis that Dani-Ella's tumour was a low grade astrocytoma. If it was in fact not low grade but perhaps a more aggressive tumour, obviously the treatment she received was not appropriate.
Alot of what I journal here is simply to help me sort out things in my mind. A bit of a summary of what my reading on a particular subject has led me to conclude with regard to Dani-Ella's disease and treatment. I know I can't change the past but I hope if I understand it a bit better I can continually move forward.
A big lightbulb moment for me this week has led me on a quest to learn more about leptomeningeal spread of low grade gliomas. This is basically when the tumour seeds through the CSF pathways. I am interested in this because Dr Charlie Teo told me he saw sugar coating in her ventricles with the endoscope. Some symptoms of leptomeningeal spread includes hydrocephalus, tumour cells in the CSF, headaches, cranial nerve deficits and back pain - Dani had most of these. Whilst this is not common in low grade gliomas there is enough literature that to me would suggest it should have been considered as a possibility by the neurosurgical/neuro-oncology team in Brisbane. And while it is rapidly progressive and usually fatal (as we know!) it makes me wonder what might have happened if this and the hydrocephalus had been diagnosed and treatment started in September when her symptoms first appeared, rather then the end of November.
Anyway, I just needed to journal my thoughts. This very nicely leads on to something else. It's a book review of "What to do when they say It's cancer. A Survivor's Guide" by Joel Nathan that appeared in the Brain Tumour Support Service newsletter:
"..if the doctor suggests a certain treatment, you should ask why? Will it help me? He also explains why he thinks you need a second opinion. Finding the right doctor is also explained; why you need a cancer specialist and not your GP and where to go if you do not feel you are getting the right care. Look for a compassionate doctor with a good bedside manner who understands maintaining self-esteem is critical; one who respects your individuality, has an open mind, and above all who you feel confident with. Someone who cares, someone you like, someone you can trust." Very good advice!
xxSharon
Wednesday, May 3, 2006 9:41 PM CDT
I am trying to put everything that is swirling around in my head into words...this is probably going to be long! My grief has many elements. My grief is very private and I don’t like to share it with anyone else. There is the intense sadness and heartbreak of not having Dani-Ella here with me everyday. There is the guilt that as her mother I was not able to save her. There is the anxiety I feel when I think of her lying in the cemetery all alone. There is the memory of her last hours as she lay in bed with us and then took her last breath in her daddy’s arms. (I don’t want to talk about what she experienced that night as it is still too private and will remain between Richard, me and Dani-Ella.) My primary "job" during the months of Dani's illness was medical researcher and advocate. I no longer need to spend hours of my day scouring for information and talking to other parents of BT kids, organising appointments and fighting whoever for treatment. Now I'm "the mother who's little girl died from a brain tumour".
Eventhough I continue to have a strong faith and trust in God, these are the emotions I feel as her mother that will never leave me. I am comforted because I know that Dani-Ella gave her heart to Jesus. Some people ask me if she knew she was dying. This is not something that I ever discussed with her but Richard told me that he did talk to her about dying when they were down in hospital in Sydney and it was the hardest thing he has ever had to do. We did talk to her about Heaven and some friends lent us a children's book about what Heaven was like. We did also tell her that it was ok to go with the Angels when they came for her.
I have sent of a letter of request today to the Royal Children’s Hospital in Brisbane for a copy of Dani-Ella’s medical records. We always found it difficult to get information out of her Neurosurgeon and are hoping something in her medical records might fill in the gaps.
I also realize that I haven’t put a lot of explanations in my journal. This is probably why I still feel so attacked that people weren’t able to understand our decisions. So, I probably need to start right back at the beginning because that is when Richard and I made a lot of decisions that carried right through until her death.
Dani-Ella’s tumour was a Grade II astrocytoma. Grade I is the “best” and Grade IV is the “worst”. Grade I and Grade II brain tumours are classed as benign tumours. This is because they are unlikely to spread to other parts of the body but may still be considered malignant by location. Obviously, there is not much room within the skull for these tumours to grow without causing significant brain damage. So, eventhough they are called benign they can sometimes be more difficult to treat than higher grade tumours.
Dani-Ella’s type of tumour – a pleomorphic xanthoastrocytoma (PXA) is very rare with less than 1 percent of all astrocytomas being PXAs and frequently consist of a tumour mass and associated cyst. PXAs do generally have a high rate of cure, hence us being told this is a good tumour to have. Some statistics - the median survival time is 7 years; 5 year survival rate is 65 percent and 10 year survival rate is 40 percent. However, it is reported that approximately 15 percent of PXAs have been shown to act aggressively and this capacity to be aggressive is what makes them Grade II. The primary treatment for PXAs is maximum surgical removal of the tumour. For PXAs that continue to grow or recur, a reattempt at surgical removal is the recommended treatment. When tumour removal is not possible or the tumour comes back the chance of long-term cure is small.
Many people believe that if you get cancer, you do some chemotherapy and you will be ok. Unfortunately, this is not always the case and so many children continue to die from this disease (I know of around a dozen children that have already passed this year). It will surprise some people that brain tumours are the most common tumour of childhood. The blood-brain barrier limits the amount of chemo that is transported into the brain. Chemo is useful only to control tumour growth and very rarely will cure low grade tumours. Therefore, chemo is generally considered to have no role in the intial treatment of low-grade astrocytomas.
Radiation therapy is also used extensively for the treatment of brain tumours. Rads can have significant effects on the developing brain and children can experience "late effects". But as my friend Loice often says, you have to be alive to have late effects! Rads may be recommended for PXAs but data suggest that it does not influence long-term outcome.
So, I hope this helps explain why it was most important for us to attempt to have the tumour surgically removed, in spite of the risks associated with an aggressive surgery. I hope it also helps you understand why right from the day of diagnosis Richard & I were so against subjecting Dani-Ella to chemo or rads. However, since Dani-Ella’s death I have come across an abstract dated Sept 2001 where a 6 year old girl with a large PXA was given 2 rounds of chemo (Carboplatin & Vincristine) to decrease the vascularity of the tumour allowing subsequent gross total resection. I believe, in hindsight, that if we had been offered this it could have been beneficial in Dani-Ella’s case and may have helped reduce the side effects of her 2nd surgery. I must admit that this is something that makes me angry.
xxSharon
Friday, April 28, 2006 2:45 AM CDT
Hi everyone,
Just wanted to let you know that I have uploaded some **NEW PHOTOS** in the photo album. If any of my CB friends can tell me how to do photo collages on Dani's page I would be much appreciative.
I am in the process of trying to get a copy of Dani-Ella's medical records. Hopefully this will help with some unanswered questions we have. I am also wanting to lobby re the cord blood issue and the CT Scanner issue for our local hospital.
I have read back over my journal and realised that there is lots of info that I never wrote about. I hope to fill in the gaps a bit for our own records...maybe one day I'll get around to writing that book everyone keeps telling me I should.
I have just visited a CB that I follow and was really impressed with what Kristen had written about the special people we would not have otherwise met. I am going to "borrow" her idea and say that eventhough this has been the worse 2 years of our lives, God has brought amazing people into our life because of Dani-Ella's brain tumour. Please say a special prayer for our BT friends: Frank & Lorna p/o angel Kieran; Peter & Cathie p/o Tamsin; Sharon m/o Sara; Mark & Julie p/o Jasmine; Simone m/o Olivia; Kristen m/o Genna; Celeste m/o Valerie Grace; Loice m/o Tori and Kelly m/o Jaden. Give your kids an extra hug today and thank God that you do not have to endure what these families have to.
xxSharon
Friday, April 21, 2006 6:23 PM CDT
I have come across this (and variations of it) on many other websites of children who have passed away from cancer. Eventhough it is incredibly sad, I find comfort in reading what other parents write knowing that I am not alone. So, I have "borrowed" it as it puts what I want to say in words better than I could.
Grieving Parent’s Wish List (Author unknown)
1. I wish you would not be afraid to speak my child’s name. They lived and were important and I need to hear their name.
2. If I cry or get emotional if we talk about my child, I wish you knew that it isn’t because you have hurt me; the fact they have died has caused my tears. You have allowed me to cry and I thank you. Crying and emotional outbursts are healing.
3. I wish you wouldn’t let my loved one die again by removing from your home their pictures, artwork, or other remembrances.
4. I will have emotional highs and lows, ups and downs. I wish you wouldn’t think that if I have a good day my grief is over, or that if I have a bad day I need psychiatric counseling.
5. I wish you knew that the death of a child is different from other losses and must be viewed separately. It is the ultimate tragedy and I wish you wouldn’t compare it to your loss of a parent, spouse, or a pet.
6. Being a bereaved person is not contagious, so I wish you wouldn’t stay away from me.
7. I wish you knew all the crazy grief reactions that I am having are in fact very normal. Depression, anger, frustration and hopelessness and the questioning of values and beliefs are to be expected following a death.
8. I wish you wouldn’t expect my grief to be over in six months. The first few years are going to be exceedingly traumatic for us. As with alcoholics, I will never be ‘cured’ or a ‘formerly bereaved’ but forever be ‘recovering’ from my bereavement.
9. I wish you understood the physical reaction to grief. I may gain weight or lose weight, sleep all the time or not at all, develop a lot of illness and be accident prone, all of which are related to my grief.
10. Our child’s birthday, the anniversary of their death, and the holidays are terrible times for us. I wish you would tell us that you are thinking about them on these days and if we get quiet and withdrawn, just know that we are thinking about them and don’t try to coerce us into being cheerful.
11. I wish you understood that grief changes people. I am not the same person I was before my child died and I will never be that person again. If you keep waiting for me to be back to ‘my old self’ you will stay frustrated. I am a new creature with new thoughts, dreams, aspirations, and values. Please try to get to know the new me; maybe you will still like me.
xxSharon
Monday, April 17, 2006 0:30 AM CDT
Just wanted to do a quick message and say we hope everyone had a lovely Easter. It has been an emotional rollercoaster for us this past week as we have our first Easter without Dani-Ella and remember that it was Easter 2 years ago that she had her first seizure.
I bought a book about Heaven that I hoped would be of comfort to me. However, it has been really hard reading and it has in fact done the opposite so I have put it aside for the time being. We KNOW that Dani-Ella is in Heaven and that she is ok and that she is no longer sick and that she is still a little girl. We like to think that there is a special place in Heaven where the angels are looking after her and all the other children. That will have to be enough for us for now.
My first visit to the hospital where I hope to have this baby was also "funny" last week. We have been back to the RCH where Dani-Ella was treated without any problems. I don't know whether it was a sound or a smell or what but something hit me and I'm sure I've got a big red X somewhere on my file now. Having had a child with cancer you can understand that I was quite interested in donating cord blood. However, I was told that the Government are not prepared to pay for the collection of cord blood and there are only a couple of hospitals in Brisbane that can do this. Therefore they would be unable to allow me to donate the cord blood unless I wanted to pay for it to be collected and stored for our own future use if necessary. Does anyone else find this appalling?
I just want to finish with a thankyou to everyone at school who participated in Think Pink day and raised $500 for the Cure for Life Foundation.
xxSharon.
Friday, April 7, 2006 4:58 AM CDT
We had a lovely time last weekend with the school Family Fun Day and then a surprise visit from our friends Rueben and Michelle who lived in Moranbah when we were there. It was great to be able to watch all the classes perform and I didn’t even feel sad when we saw Dani-Ella’s class do their segment. A busy week again being the last one of the school term. We are now on Easter holidays (yeah) and are looking forward to a couple of days away. However, a busy weekend of painting before hand!
I also wanted to take the opportunity to confirm the rumours that we are expecting another child. I had an 18 week ultrasound today. This has made the last 3 months harder for us as we try to understand why God would take Dani-Ella and then bless us in this way – another "why" we will never know the answer to I guess. Thank you to everyone who has been so supportive and have confirmed our belief that this is a special gift from God. It was interesting to talk to the radiographer as one of the questions we have had is could Dani-Ella's tumour have been picked up on an ultrasound. We were told by the NS that it was likely she had had the tumour since birth. The radiographer said basically that if it took until the age of 6 to claim her life, the tumour would have been much too small to see on ultrasound.
Our life has not gone the way WE have planned. Our plan was have all our kids quickly so I could resume my career (it's now been almost 10 years since I have worked full-time). Now we will have 3 kids with 5 years between each. We never planned to have a seriously ill child. Now we are dealing with the death of our beautiful 6 year old. It reminds me of the poem “Welcome to Holland” which tries to explain how it feels to raise a child with a disability but I think it also can apply to other things that have changed for us in the last 2 years.
Welcome to Holland
When you have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books to make your wonderful plans. The Coliseum. The Michelangelo David. The Gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
You pack your bags and off you go. Some time later, the plane lands. The stewardess comes in and says, “welcome to Holland”.
“HOLLAND?” you say. “What do you mean Holland? I signed up for Italy! I’m suppose to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they have not taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It is just a different place.
So you must go and buy new guidebooks. And you must learn a whole new language and you will meet a whole new group of people you would never have met. It’s just a difference place. It’s slower paced than Italy, less flashy than Italy.
But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming from and going to Italy and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain will never, ever, ever go away because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t go to Italy, you may never be free to enjoy the very special, the lovely things about Holland.
xxSharon
Friday, March 31, 2006 4:18 AM CST
Our grief has not been as overwhelming lately. But please don't think that because we are out and about more that we no longer feel sad that Dani is not with us. We are trying to have happy times again with our other kids and try to remember the happy times we had with Dani-Ella.
have been busy this week with our new kitchen going in and trying to co-ordinate everything has been a challenge. I feel that my ability to cope with many things happening in my life at the same time has diminished. I guess we are still recovering mentally from having to make all the decisions we have had to make in the last 12 months.
I thought the edition of Insight on SBS last week was very interesting. It was titled “Diagnosis: Cancer”. I could barely contain myself as many people spoke about their relationships with their docs and getting second opinions. This combined with the recent press about the state of our Children’s hospitals and the recommendation that they all be closed down has spurred me to continue writing my “letter”. However, I am wary of our story becoming political.
I recently read an email about the treatment another child had received at the Royal Children’s Hospital, Brisbane for a brain tumour over the last 4 years and this was my reply:
“So much of your story is ours...being mucked around with appointments, tumour growth but being told it was significantly unchanged, being made to feel stupid for asking questions, not given ALL the information to make decisions, etc, etc. We also looked into Gamma Knife in the UK but Dani-Ella's tumour was too big and they told us it was too risky. Also, they had never used Gamma Knife on her type of tumor - a rare PXA.
After a failed surgery and 9 months of watch and wait we went to see Charlie Teo. He operated and got we believe a gross total resection. In my daughter's case this was a "cure" as her tumour was a Grade II Astrocytoma. She needed rehab after surgery as the tumour by this stage was 6cm. We did a number of months rehab at the QPRS at Royal Childrens. She developed hydrocephalus in Sept (we believe undiagnosed by the rehab team for many weeks as she
deteriorated and these are suppose to be brain injury specialists) and needed shunt surgery at RCH. The MRI at the time to check the shunt showed some tumour recurrence and we were offerred low dose chemo. We went home only to return 2 weeks later when she became ill again. They kept her in hospital for 1 week and couldn't find anything wrong so discharged her very ill (vomitting every day,
slurred speech, unable to walk) and in so much pain. She was so ill the rehab team paged the neuro team on the day we left...but nothing ever happened. We emailed Charlie Teo that night and he told us to come on the next plane down to Sydney. He did endoscopic surgery the next day and found tumour. Needless to say, we are so unhappy with her treatment in Brisbane. We didn't have Dr Walker but did talk to him a couple of times early on. We had Dr Vonua who was highly regarded in Brisbane and Dr Hassall who advised us initially on onc issues. In hindsight we should have gone straight to Charlie Teo.
Anyway, just wanted to say I have been through what you are going through and your story makes me angry that we are not the only ones!”
Obviously, we are still finding it difficult to come to terms with the treatment Dani-Ella received in Qld and the impact it had on her prognosis. Prayers for our BT friends Genna, Timmy and Valerie Grace this week.
xxSharon
Friday, March 24, 2006 8:47 PM CST
Today was both a very happy and a very sad day for us. Our girl's school had a Think Pink day in memory of Dani-Ella and at our request the money donated today to wear pink was for the Cure for Life Foundation.
It was happy because the liturgy was to celebrate the happy memories everyone at school had of Dani-Ella. We realise that her school friends did not get the opportunity to say good-bye to her as she got very sick, very suddenly. It was comforting to us that everyone could remember the happy times they had with Dani-Ella at school and the sea of pink on assembly was unbelievable (special note must be made of Mr Heff's bright pink socks and the pink Dani-Ella t-shirts made by Melissa). We again thank all the staff and school leaders involved in making such a day possible.
However, it was also sad for us because Dani-Ella is no longer here to go to school and play with her friends. We regret that these children must deal with the loss of a friend at such a young age. All we can say is that her passing was as unexpected to us as it was to them. We were told Dani-Ella had a "good tumour". A benign tumour with good survival rates and a low chance of acting aggessively. Her sugery was suppose to be a "cure".
Unfortunately, this was not meant to be our story. As someone else recently said, sometimes you don't have any good choices to make, only bad choices. You make the best bad choice that you can for your child.
xxRichard & Sharon
Tuesday, March 14, 2006 6:42 PM CST
It’s now been 10 weeks since Dani-Ella left us and it feels like 10 years. Her funeral service was held on 6th January and we felt so blessed that so many people came. Not only that, but that so many people wore pink in her honour. Immediate family wore pink rose corsages/buttonholes and we had a number of bouquets of pink roses around the church. Dani’s little casket was pale pink and silver. The pallbearers were her grandads - Ian Barrett & Ian Jack and her uncles - Nev Zarkovich & David Jack.
The service went exactly how we wanted it to. As people arrived, we played her favourite Andrew Chinn songs – Flutterby Butterfly and The Rainbow Song.
Our Pastor welcomed everyone and read Psalm 91. This has been very significant to us over Dani-Ella’s illness. We then sang a Hillsong – “Shout to the Lord”. Pastor Steve Penny gave the message which is summarized as follows:
As Christians we sorrow differently because we have the assurance that there is an Eternity, there is a Heaven, there is a God and there is a great hope of Eternity together. There are some decisions that we as Christians make that help us in such a dramatic occasion:
• We decide that eventhough this is a very sad day, it is not a bad day. The bible tells us that all things work together for good for those who love Him. If you make this an evil day, you get angry and bitter with God.
• We make the decision not to ask the unanswerable questions. There a 3 that you must never ask otherwise they will destroy you when you face something as traumatic as this:
o You should never ask why – that belongs to God
o You should never ask why me – you can never answer that
o You should never ask why me God – we won’t know why God allowed this to happen to us until we get to Heaven
• We have not lost a daughter we have simply released her to a better place. Dani-Ella is already decorating heaven with pink. We make the decision that Heaven is our destiny for ever and ever and ever. Dani-Ella has just got a head start.
Emmelyne gave the Eulogy which she wrote herself. We were so proud of her, this is what she said:
My Sister Dani-Ella
Dani-Ella was a great person, but to me she was a great sister. These were some of her favourtie things:
Her favourite colour was pink. Her favourite sport was cricket and riding her bike. Her favourite hobby was dancing. Her favourite toys were Pinky (her pink teddy), Purpie (her purple puppy), her Barbies, her Bratz dolls and My Little Ponies. Her favourite games were Red Rover, Duck-duck-goose and Snakes and Ladders. Her favourite TV shows were Totally Spies and Atomic Betty. Her favourite book was Disney Princesses. Her favourite activity was painting.
Dani-Ella had a great life until...a tumour arrived in the deadliest place. After the operation her life changed, but the doctors hadn’t got all the tumour. One year had passed and the tumour was growing. She had to go back to hospital. A few months later she had to go back again to get fluid out of her brain. But the cancer had spread too quickly and she helplessly died. She was a great patient.
Benign tumour to malignant, death to heaven.
After Emmelyne spoke, we showed a slide show of Dani’s life while Richard sang “Butterfly Kisses”.
As we left the Church we played “His Eye is on the Sparrow”. This was significant to us as Richard had sung this song for Dani-Ella 12 months earlier.
We then invited everyone to join us for the committal service at the Maryborough “Garden of Rest” Ceremony. Ngari sang Psalm 23 and some friends told us that during the ceremony they looked up and there was a perfect heart-shaped cloud.
Afterwards we invited everyone back to the church for refreshments. We were so glad so many people stayed and joined us for afternoon tea.
By the way, you will see I've loaded a new photo. This was the front page of the Order of Service we did for Dani-Ella's funeral. The photo has to be just about our favourite one of her and was taken just before we left for Sydney for her surgery on 1st June 2005.
Thursday, March 9, 2006 3:47 AM CST
Sorry everyone that it has been so long since my last update. We have been keeping busy..I have gotten back into painting the house again in anticipation of my new kitchen and we have been going out alot with friends and entertaining a stream of visitors. I have also had some accounting work to do and have been organising a 5 week trip in June. We are going to Tasmania. We will drive to Sydney and then catch the ship to Devonport. Spend 3 weeks in Tasmania and then catch the ship back to Sydney. As many of you know, Dani-Ella was approved for a Make-a-Wish (MAW) trip and the plan was to go this winter as her wish was to see snow. We decided that we still wanted to go so it will be a bittersweet trip.
Today our dear friends Dennis & Cheryl drove up to visit us as they are in Qld visiting from NZ. I said to Richard that we don't realise how much we have missed them until we saw them again.
As we come up to Easter, Emmelyne reminded us of an Easter a few years ago. I had bought the girls a chocolate bunny each and left it beside their beds. Dani woke up first and by the time Emme woke up Dani was sitting there with one bunny under each arm (both hers and Emmelyne's) scoffing both of them as fast as she could. As you can imagine, Emmelyne was not impressed!
I have been reading a book by Dr James Dobson called "When God Doesn't Make Sense". I think the following excerp from the book sums up what it is about. I hope it is helpful to those who have experienced tragedy and something to remember when the time comes for the rest of you:
"How can an infinitely loving and just God permit some people to experience lifelong tragedy while others seem to enjoy every good and perfect gift? And what can we conclude when the unfortunate individual is a child? Well, I know the answer offered by theologians - that sickness and death came into the world as a result of sin, and we are all under the sentence of death. It comes to some sooner than others. I understand and accept that explanation, even though it leaves us with a troubled spirit. Admittedly, this explanation of suffering is not very satisfying as we look into the face of a child in pain. It is, however, the best we can do. I've indicated that we can explore the mind of God only so far, and then, inevitably, we run out of brain power. His thoughts are not only unknown to us - they are largely unknowable. He has never made Himself accountable to man, nor will He ever. He will not be cross-examined or interrogated. Nowhere in the Bible does God speak defensively or seek our approval on His actions. He simply says, Trust me. In His lengthy interchange with Job, not once did He apologize or attempt to explain the hardship that befell His servant. Still, we are told specifically that God is loving, kind, merciful, long-suffering, gracious, fatherly, patient, etc. So what are we going to do with the discomfort of unanswered questions? It all comes down to the choices posed by Dr Jim Conway. Either we continue to believe in God's goodnes and postpone our questions until we see Him face to face - or we will decend into bitterness and anger for the suffering around us. There are no other alternatives. Inevitably, you see, we circle back to the necessity of faith."
Our faith has survived!
The God we serve is able to save us from it, and He will rescue us from your hand, O King. But even if He does not, we want you to know that we will not serve your gods or worship the image of gold you have set up. Daniel 3:17-18
xxSharon
Friday, February 17, 2006 5:36 AM CST
I just wanted to post some of a letter of condolence we received today from the Royal Children's Hospital school. Dani-Ella attended a couple of hours of school here and there whilst we were living at Ronald McDonald House in Brisbane for her rehab.
This is what her teacher writes:
"..she was a little ray of sunshine and so kind and gentle and caring towards the others.."
How perfectly does this sum up our Dani - a little ray of sunshine!
xxSharon
Quick Update Tuesday, 21st February
I have 2 prayer requests for today - please pray for Genna who is having surgery today and for angel Kieran's family as they adjust to life without their precious son.
Thankyou to all those who come here to pray.
The following is an extract from the Beyond Indigo website:
"Grief after the loss of a child takes time, there is no timetable involved but there should be healing as one goes along. The first year you are almost in the state of shock most of the time it is natures way of protecting you from the terrible loss you have suffered. That second year when shock starts to wear off so many other emotions take over, but feeling better and having the pain subside a little is not something to feel bad about. In the third year you should be able to laugh and feel good about things. You should remember you child with love and keep their memory alive in the good things that you do for others and possible even in your child's name."
Saturday, February 11, 2006 0:02 AM CST
Hi everyone,
Just wanted to do a quick update - Richard has taken the kids to hockey. We are doing better this week healthwise. I am feeling more "well" and have even been painting for a few hours per day and not needing to rest so much. I am going for down to St Stephens for tests next week though - nothing serious. Richard's blood pressure this week was perfect - if it continues to be normal he may be able to look at going off the medication he is on eventually.
We are busy getting the kitchen ready for our new kitchen to go in. I have been waiting for 3 years for this so it is very exciting. The tiling is being done as I type and then when I finish painting the cabinets, etc can go in.
I really want to talk about Dani-Ella's funeral service as I realise I haven't really posted much about that. I promise I will do this next time. I am also in the process of writing a letter about Dani-Ella's treatment from her diagnosis to her death...more of a therapy for me then anything. I anticipate this will take a few weeks and then I may post it on her website. As most people will know Qld Health is in a disgraceful mess. Our A&E is going to close by the end of the month. I will tell you that last July when I was living in Brisbane with Dani-Ella I spent alot of time at the RBWH and RCH and overheard many conversations in lifts and when walking the corridors. We were lucky to have the resources and insurance to choose private treatment.
We offer Frank & Lorna our heartfelt condolences on the passing of Kieran.
xxSharon
Monday, February 6, 2006 5:58 PM CST
Thought I should update but didn't really know what to say. We are back in the routines of normal life. Richard is busy at school and the kids are happy. Richard has signed them up to play hockey this season. Emmelyne is also back into her extracurricular activities of dancing, violin and tennis.
Over the last week I have been pondering the treatment Dani-Ella received at the hands of the RCH. I thought that what I felt towards the Brisbane doctors was anger but have come to realise that it is a deep sense of betrayal. We entrusted our daughter to their care only to realise 9 months later that she had been put into their "too hard" basket. Not only did they not offer us any treatment, they never told us to go and find someone who could. It was only through our own research and our own initiative that we were able to find another neurosurgeon who offerred us some hope of curing Dani-Ella.
It is confusing to me why 6 months after a gross total resection of a benign tumour our girl died. We were in Brisbane seeing specialist doctors and acquired brain injury therapists every day for months. How could these specialists not pick this up?
It's not as if we didn't have a good track record with our parental intuition or "momma gut" as it is commonly called. When initially we saw her having "turns" that nobody else saw we got a referral to a Pediatric Neurologist who firstly diagnosed epilepsy and then after we agreed to an MRI scan a brain tumour. When RCH would not treat her and our "gut" told us this wasn't right we started sending her scans all over the world and made an informed decision to have another surgery. When after her surgery she started getting sick we phoned and phoned and phoned for weeks until RCH told us to bring her down and found she had acute hydrocephalus requiring emergency surgery. Surely when she was discharged from RCH in November clearly still sick and in pain our concerns should have counted for something with these doctors.
My good friend Loice said to me when I joined the PBT list at the end of 2004 that we must find our own path through this brain tumour journey - the path of LEAST regrets. We do believe we found this path and travelled it.
xxSharon
Saturday, January 28, 2006 5:22 AM CST
All I can say about this week is that it has been a sad, sad week. Everywhere I ‘ve been this week has been full of memories of Dani-Ella - school, preschool, dance studio. This week I have felt so “different” to all the other parents. This is not a criticism of you as I so truly value your friendships it is a feeling that comes from inside me. A realisation that I miss the way our life use to be. I miss getting annoyed over the small, inconsequential things of life. I miss stressing out over petty decisions that we all make everyday. This is how you feel I guess when the worst possible thing has happened in your life. That is why us PBT families feel such a strong bond. We understand each other and never pass judgement or offer meaningless platitudes. We have all been in that doctor’s office and heard some of the most scariest words a parent could hear “your child has a brain tumour”. We then had to go back to our child and our life with the knowledge that we are facing a long hard battle with this disease that will ultimately end with our child’s death. We miss Dani-Ella so much and “the grief we feel is suffocating at times”.
On a happier note, Emmelyne has loved school this week. She got the teacher she wanted and was very happy to see her friends again. Jaiden also loved preschool. He has asked everyday when he goes back again. Jaiden was also very happy to have his best friends Nicky and Duncan come over for morning tea and a play this week. His misses not going to Carramar with them this year. We also managed a family bike ride this morning down to the park for morning tea.
I continue to feel unwell but find vitamins and a daily rest are helping. The social worker explained it to us like this - we have lived for so long at a higher level of anxiety/stress than most people and now we have to come down from that level back to a normal one.
xxSharon
Saturday, January 21, 2006 10:06 PM CST
It's 3 weeks since Dani-Ella passed away. We are still quite numb I think but missing our girl very much. Richard & I watched the video that was in the video camera last night. The video started with Dani-Ella losing her first tooth just before we left for Sydney for her surgery in May 2005. It went on to Think Pink day at school, her doing the Splish/Splash dance at ballet which was suppose to be for the end of year recital and then our trip to Sydney. The video constantly showed us how much Dani-Ella was loved by her friends.
We continue to believe that we have made the best decisions we could have during our brain tumour journey and have no regrets. However, we do acknowledge that if we knew then what we know now we may have made different decisions. After Dani-Ella's first unsuccessful surgery in August 2004, we were put on watch and wait. We were not offerred any futher treatment at that stage. As parents who are told your 4 year old has a large brain tumour, when faced with a team of specialists including neurosurgeons, oncologists, neurologists, etc you do not question them. It took us many, many months to realise that we could seek other opinions.
Richard returned to work last Thursday after 10 weeks off and the kids go back to school this week after a long summer holiday. Emmelyne is in Year 5 and Jaiden starts preschool. I think the next couple of weeks will be difficult as we adjust to more of a normal life.
Richard wanted me to write that the night after Dani-Ella died, when he was lying in bed he saw a field full of flowers. Dani ran up to the edge of the field with handfuls of flowers she had picked, lay down on the grass and looked over. She said to Richard "I love you daddy and I'm ok". After this she hopped up and ran back into the field to play. She was completely normal with none of the deficits she had after her surgeries.
We have been following the story of Kieran in Scotland and have formed a very special bond with his parents. Kieran was diagnosed many years ago with the same tumour as Dani-Ella - a Pleomorphic Xanthoastrocytoma. Kieran is now also nearing the end of his battle. Please visit his website at www.geocities.com/Kieransweb/ and leave a message on his guestbook. We are thinking of you everyday Frank, Lorna & Kieran!
xxSharon
Sunday, January 15, 2006 10:43 PM CST
We have returned home after 5 days at the Gold Coast. We had a great time and the kids loved Dreamworld and Seaworld. While we were driving home late yesterday, Emmelyne(9) asked us if Dani-Ella would have the job of painting the clouds pink at sunset. We told her that we were sure she would be helping out! Jaiden(4) every now and then will say..I miss Dani-Ella.
I wanted to post some of what Steve Penny said at Dani's funeral.
1. Just because it's a sad day does not make it a bad day. The bible says that all things work together for good and so we choose to make today a good day and not an evil day.
2. Don't ask the questions "why" and "why me God". These questions have no answer this side of eternity. Asking why all the time only brings torment and prolongs grief and sorrow.
I also wanted to post some information on the Cure for Life Foundation which was established by Dr Charlie Teo. We asked that any donations be directed to this foundation because in children brain cancer is the 2nd most common type of cancer after leukemia and no other disease kills more children today. The Cure for Life Foundation was created to advance brain tumour research. It helps fund advancements in the treatment of brain cancer. The foundation also runs a children's brain tumour rehabilitation programme. We have friends whose children directly benefit from this programme.
xx Sharon
Saturday, January 7, 2006 6:02 PM CST
We said goodbye to our girl yesterday. We thought her service was perfect.
We want to thank everyone who attended her funeral service. Best guess is that there were around 350 people present. So many of our friends and family travelled for many hours to be with us on Friday and we appreciate it so much. We were also very much supported by our Maryborough friends.
We also want to thank everyone involved in the service. So many people helped us - Chris Foley who recorded Richard's song, Les Conroy who did the Power Point presentation, Selwyn Connell who dropped the song, presentation and video on to DVD, the guys at Church who looked after the sound (15mins before the service the aircons and sound tripped out), the ladies who provided the refreshments after the service and the guys who directed traffic and helped seat people in the church. To Steve & Ngari who made sure everything came together so wonderfully (Steve we know you had a bit of a stressful week over this) and Steve Penny for giving such a comforting message.
Thankyou to everyone who has sent us flowers and cards or made a donation to Cure for Life on Dani's behalf.
xx Richard & Sharon
Sunday, January 1, 2006 8:29 PM CST
Dani-Ella's death notice:
Jack, Dani-Ella Rose - of Lennox Street Maryborough. Passed away peacefully at home on January 1, 2006. Aged 6 years. Dearly loved daughter of Richard & Sharon. Loved sister of Emmelyne & Jaiden. Beloved granddaughter of Ian & Ruth Jack, Ian & Faye Barrett. Great-granddaughter of Gordon & Eileen Conwell. Loving niece of David & Teresa, Michael & Melissa, Neville & Cassandra.
"Our brave princess now safe in the arms of Jesus"
Relatives and friends are invited to attend Dani-Ella's funeral to move from the AOG New Life Centre, Alice Street, Maryborough on Friday, January 6 after service commencing at 1pm for interment in the Maryborough Garden of Rest Cemetery.
No flowers by request, in lieu donations preferred to the Cure for Life Foundation.
What a comfort to know that Dani-Ella right now is in heaven where there is no time. The emails and messages we continue to receive are also of great comfort to us.
xxRichard & Sharon
Saturday, December 31, 2005 11:56 AM CST
It is with great sadness that we have to tell you that Dani-Ella has passed away. Our brave princess went to be with Jesus at 2.13am on 1st January 2006. She passed away peacefully at home in her daddy's arms.
Dani-Ella's funeral will be held at the Maryborough New Life Centre, Alice Street on Friday 6th January at 1pm. Of course, there will be lots of pink.
Richard & Sharon
Friday, December 30, 2005 4:53 AM CST
We still haven't got a computer so I haven't been able to update regularly. Once again I've had to borrow one.
Dani-Ella has deteriorated in the past 24 hours. She has been sleeping most of the time and has been unable to take her medication due to vomitting and swallowing problems. This afternoon we had a syringe driver set up for her. This means she gets a constant dose of medication over 24 hours through a small needle placed just under her skin. She is receiving morphine, promethazine, midazolam and hyoscine. She is on conservative doses of these drugs at present. We also made the decision to begin weaning her off the dexamethasone.
We only welcome visits from family members now. We also hope that our families can understand that we want to be alone with Dani-Ella at this distressing time and keep visits short. This is a special time and is about Richard, me, Dani-Ella, Emmelyne and Jaiden and we will not tolerate any intrusions.
I'm sorry if this sounds harsh but it's what we want.
xx Sharon
LATE PM UPDATE
Dani became agitated after our GP and Blue Care nurse left this afternoon. She ripped out her needle for the syringe driver and we had to call the nurse back to put another one in. She remained very agitated for a couple of hours and finally settled down enough to go to sleep around 9.30pm. She was up a number of times through the night vomitting (eventhough there is nothing in her belly) and we will probably add maxillon to her cocktail today as Richard thinks she is aspirating.
Sunday, December 25, 2005 2:10 AM CST
Dani-Ella had a lovely surprise yesterday - snow on Christmas Eve. Ok, well fake snow (it was over 30 degrees C yesterday). We made it up with freezing cold water in the wheelbarrow and spread it around our garage and she got to feel it and put her feet in it. Then the adults and older kids got to have a pretty good snow fight - the only one in Maryborough I bet. A big thankyou to Sonya who organised it and the company Wilson's Displays who donated it as well as driving 5 hours to deliver it - it was very special.
We've had a very hot Christmas day (it got to about 34 degrees C) and are now waiting for a hail storm which has been forecast for this afternoon. We went to Church this morning and then came home for a BBQ breakfast and opened all our presents. The kids were kept entertained with their gifts until a lunch of fresh prawns, ham and turkey. After lunch we went for a swim and then a big sleep. We've just had my Nan's plum pudding with brandy custard. It'll be left overs for tea.
Dani-Ella has done quite well today. She was very tired after Church but eventually awoke to open her Christmas presents. She has been vomitting alot in the past few days and we've started giving her zofran again. We don't think she can see very well anymore. She is still happy to snooze during the day, loves sitting up in a chair with people around her and still goes swimming with Daddy everyday.
David & Teresa left this afternoon after lunch. Thankyou for coming over to Qld to be with us we have appreciated your support. The kids have had fun with their cousins.
Tuesday, December 20, 2005 4:02 PM CST
Ok I've had my vent and now we can move on...
I am still without a computer so this may be the last update for a little while - we have ordered a new computer which hopefully will be here this week. David & Teresa let me borrow their laptop overnight to get my internet fix after a week without it.
We are going to Hervey Bay today to pick up our other 2 kids and then need to try and get organised for Christmas. We are having Christmas at our place this year - ham and eggs on the BBQ for breakfast then turkey & salads for lunch. We are having Nanny, Grandad, Aunty Cass, Uncle Nev, Uncle David, Aunty Teresa, Josh & Chantelle here with us this year.
Wishing everyone a happy Christmas with your loved ones!
Tuesday, December 20, 2005 4:07 AM CST
Tomorrow will be 4 weeks since we were told that was probably as long as we would have left with our Dani-Ella. But she has always been our child with a "determined" spirit. I remember hearing a broadcast on Christian radio about how these determined children were a special gift from God. We count everyday now an extra precious day for our family to enjoy with her.
As I continue to post that she is well, she is..but this is in the context that she is very sick and she is terminally ill on palliative care. She needs to sleep during the day, can only sit up for short periods of time, is not eating or drinking very much, vomits most days, needs morphine for the pain in her neck and back, is regularly incontinent, is very weak on her right side, has a very noticable head tilt and her eyes are now crossing. These are all signs of disease progression.
Whilst most people have been very supportive, it is insulting and upsetting to me that others are unable to accept that Dani-Ella is terminally ill. Instead of supporting us and respecting us as parents as we watch our 6 yo daughter die they are talking about what they think we should be doing. All I want to say to those people is that this is our child and we are doing what we consider the best for her. We have spent 18 months of our life researching her disease, joined support groups with other parents of children with brain tumours, sent her scans all over the world for 2nd opinions and carefully and prayerfully considered treatment options. We can live with the decisions we have made. If the docs could guarantee that chemotherapy would be successful then we would have jumped at the chance. The oncologists (one in Sydney we were referred to by Charlie Teo and the other is a pediatric oncologist specialising in brain tumours) we have spoken at length with didn't think that chemotherapy would extend her life. The chemo they wanted to give her (carboplatin, vincristine, vinblastine, temador) would have meant she would spend her last days in hospital away from her family and friends. She would have sufferred side effects (which you can find yourself by doing an internet search). Richard and I were in total agreement regarding the difficult decision we made and was supported by all her docs in Sydney.
As you can tell, I am allowing myself the luxury of a few minutes to vent and shout that this is not how Dani-Ella's story was meant to end!
It seems to be harder when we are the recipients of seemingly random acts of kindness (blessings from God) - my hairdresser who spent 2 hours shampooing, cutting, foiling and blowdrying my hair today and then told me she wasn't charging me - this is just for me, the pharmacist who gave me a large stuffed dog that laughs when you press its foot because Dani might like it and our Church who came around tonight to sing Christmas carols on our front lawn.
I want to send thoughts and prayers of peace to all my PBT friends. Give all your kids hugs and kisses from me and Dani-Ella this Christmas.
And finally to all my friends who are calling to make sure I'm ok..I'm taking my vitamins!
xx Sharon
Sunday, December 18, 2005 1:29 AM CST
Well we a back at home now after a lovely short break at Toogoom. Emmelyne & Jaiden are staying with mum & dad at Hervey Bay for a couple of days as a special holiday treat.
Dani-Ella continues to be well and is still enjoying a swim everyday.
Our computer died so I won't be able to update regularly until we can replace it this week.
Sunday, December 11, 2005 10:15 PM CST
Dani-Ella remains stable and we’ve had a couple of lovely days with her. We’re in a bit of a routine now that her meds have been right. She is sleeping better at night and more awake during the day. Her appetite has improved slightly also. We are getting lots of “best dad” and “best mum”, “I love you” and lots of kisses and snuggles.
Many thankyous to the following people:
• To all Dani’s friends from school who have visited and brought her special gifts – Anastaysa, Louisa, Jassmine, Niki, Aleyah, Shania, Zoe
• To Steve and all the staff at MSHS for caring and for the fantastic Christmas hamper and to Leigh for the Christmas cake
• To all our friends who have dropped in food (particularly appreciated by my husband) and other gifts
• To all the dancing mothers who have kept a special eye on Emmelyne for me this year and have done extra practices with her so that she knew the dances for the concert
• To Kathy who sewed Emmelyne’s costumes this year for the concert
• To Alison, Antonia and all the other Carramar mums who have picked up or looked after Jaiden for us this year
• To Bernie who made Emmelyne feel so special at Kindy breakup and for dropping the disk of photos in our letterbox
• To Chris, Karen and Daniel for all your time at school this year organising teacher aides and other special things Dani has needed (as my Mum keeps telling me – moving our kids to St Mary’s was the best thing we ever did)
• To Melissa for all the things I’m only just hearing about now such as donating fabric for Dani’s quilt
• To our Pastor and Church – we feel your continued prayers for us
• To everyone who signs our Guestbook – you will never know the encouragement and support you give us
• To everyone praying for us – we will not stop believing for a miracle
Richard & Sharon
Saturday, December 10, 2005 6:22 PM CST
Just a quick update..will try to do more tonight when it's not so hot!
We decided not to go to Caloundra. Instead, we drove to Toogom today to see if the house there would be suitable as it is closer to home then Caloundra. We went with Richard's brother and his family and we all had a lovely day. The house is right on the beach so the kids went swimming and then we took Dani down for a game of cricket on the beach. (Cricket is her most favourite game in the world). We will go back and stay at Toogom for a couple of days later in the week as Dani-Ella tolerated the drive (approx 40mins) very well.
Wednesday, December 7, 2005 4:08 AM CST
Dani-Ella has had another good day today...we feel so happy to have some "good" days and that we have managed to get the medication right for her. She is still lying down most of the time, dozing on & off. We have our family around us and just feel content choosing not to dwell on the fact that we could lose her very soon. Dani had her friend Jassy visit this afternoon & is looking foward to the Barbie movies she is dropping in for Dani tomorrow. Her cousins Josh & Chantelle arrived today. Emmelyne, Jaiden, Josh & Chantelle had a fun afternoon around our pool and Richard even took Dani in for a splash..dress and all!
Another special thing that happened today was that Dani-Ella received her quilt and how beautiful it is. Thankyou to Linde & Quilts4kids & all the ladies from all over the world who stitched the squares for her quilt.
I have another poem for you that I have come across - for our beautiful & brave girl.
What Cancer Cannot Do
Cancer is so limited....
It cannot cripple Love
It cannot shatter Hope
It cannot corode Faith
It cannot destroy Peace
It cannot kill Friendship
It cannot suppress Memories
It cannot silence Courage
It cannot invade the Soul
It cannot steal Eternal Life
It cannot conquer the Spirit.
If you go to the quilt4kids link below you can see photos of Dani-Ella with her quilt.
Monday, December 5, 2005 10:44 PM CST
Dani-Ella is peaceful and comfortable at the moment. Today is the second day that she has been awake most of the time with periods of dozing off. She is sitting out by the pool at the moment with her feet in the water.
To all of Dani-Ella's special friends, if you would like to have a SHORT visit with Dani we feel she would be up to it. Please call before hand to make sure it is convenient as we have lots of grandparent, aunt & uncle visits going on. Richard's brother & his family have come over from Perth for a couple of weeks. Thanks to all who have visited already and to all those wonderful people who have dropped off meals and are praying for us. It is appreciated.
We are planning on going to Caloundra for a week on Saturday, depending off course on how well Dani-Ella stays.
Thursday, December 1, 2005 8:11 PM CST
Dani-Ella is reasonable comfortable now after a couple of days of finding the right level of medication that would keep her painfree but not too sedated. She is taking a cocktail of drugs including dexamethasone (corticosteroid to help swelling and inflammation of the brain), fentanyl patch & oral morphine (for pain relief), zofran (for vomitting), zantac & phenergan (to counteract the side effects of the other meds), tegretol (anti-convulsant).
She is either sleeping or drowsy most of the time but when she is awake she is still able to talk and interact with us. She still enjoys watching DVDs and has enjoyed looking at the Christmas cards that have come home from school this week. As her disease progresses, her food & drink intake is reducing significantly and she has started to lose weight.
We are so grateful to our local GP who is being very caring and supportive at this time. He is in contact with the Oncology Unit RCH Brisbane to make sure he is offering us everything possible in Dani-Ella's palliative care.
Tuesday, November 29, 2005 6:23 PM CST
Dani-Ella contiues to be unwell as we struggle to find the right level of medication to keep her comfortable. I came across the following poem on the PBT list;
God's Lent Child
I'll lend you for a little while, a child of mine God said. For you to love the while she lives, and mourn for when she's dead.
It may be six or seven years, or forty-two or three, but will you till I call her back, take care of her for Me.
She'll bring her charms to gladden you and should her stay be brief, you'll always have her memories as a solace for your grief.
I cannot promise she will stay since all from earth return, but there are lessons taught below I want this child to learn.
I've looked this whole world over in my search for teachers true, and from the folks that crowd life's lane I have chosen you.
Now will you give her all your love nor think the labour vain, nor hate Me when I come to take this lent child back again?
I fancied that I hear you say, dear Lord Thy will be done, for all the joys Thy child will bring, the risk of grief we'll run.
We'll shelter her with tenderness, we'll love her while we may, and for the happiness we've known forever grateful stay.
But should the Angels come for her much sooner that we've plan, we'll brave the bitter grief that comes and try to understand.
God bless,
Sharon.
Saturday, November 26, 2005 6:15 PM CST
Richard & Dani-Ella have come home. After alot of drama with Jetstar, Richard & Dani were allowed on the plane with 4 mins to spare and no luggage after Richard argued with them for 25 mins to let him on.
We now begin a new phase of our brain tumour journey. Our local GP has insisted on doing Dani's palliative care personally and for this we are thankful. Please be mindful that Dani-Ella has undergone 2 brain surgeries within the last week from which she is still recovering. Royal Children's in Brisbane want us to bring Dani to hospital for further tests and care but we have refused.
Make-a-wish have offerred to send us to Adelaide this week for Dani's wish to see snow. There is a snow dome down there with man-made snow. However, the logistics are impossible - it would mean catching 3 different planes and many hours of flying and stopovers in Brisbane and Melbourne.
Again, the following information is recorded here for OUR future reference.
21st Nov Dr Charles Teo - removal of VP shunt & endoscopic septum pellucidotomy & cyst fenestration
23th Nov CT Scan - The lateral ventricles are quite markedly dilated, especially the left side. There is a small amount of fresh blood layering in the occipital horn of both lateral ventricles. There is air in the ventricular system as well as the subarachnoid spaces. There is a drainage tube entering via a burr hole in the right frontal bone. The tube passes through the frontal horn of the right lateral ventricle, the right foramen of Munro and into the third ventricle. There is a large cavity of the left temporal lobe. The margins of this cavity are irregular with think enhancing nodules protruding into the cavity. The cavity and its surronding wall measure about 6cm in diametre. It is especially thick on the medial and superior surfaces of the cavity. The frontal horn of the left lateral ventricle is elevated. There is enhancing tissue extending into the thalamus and posteriorly into the mid brain.
24th Nov Dr Mark Couglin - insertion of VP shunt
26th Nov discharged from Prince of Wales Private Hospital with oral meds - final diagnosis is extensive pleomorphic xanthoastrocytoma
Wednesday, November 23, 2005 2:40 AM CST
Dani-Ella is still very unwell. Dr Teo was very concerned that she had not improved as usually with shunt infections once the shunt is removed and the patient is started on antibiotics there is an immediate improvement. He ordered a CT scan this morning. The CT scan showed that the tumour has recurred in many areas of her brain and it is growing very aggressively. In fact, he expressed his disbelief that what is suppose to be a low grade tumour has grown so quickly. We knew from the MRI scan that was done on 21 October that there were a couple of small recurrences around the margins of the last surgery - the largest being 22mm. Eventhough her spine was not X-rayed, he believes that her back and neck pain could indicate that the tumour has spread down her spine. Dr Teo believes the cancer is much worse then what is showing on the scan as he saw "sugar coating" in her ventricles with the endoscope.
We were offerred 3 options and the decision we have made is that tommorrow morning she will have a new shunt placed. She will start on steroids which will make her feel alot better and we will bring her home to Maryborough.
Tuesday, November 22, 2005 5:37 AM CST
Richard phoned me tonight after seeing Dr Teo. He is a bit perplexed as to why she has not improved today. As she is not eating or drinking much, they put her back on IV fluid which was discontinued this morning. She is still vomitting, tired, complaining of back/neck pain and just generally still not herself. Hopefully, the antibiotics will kick in and she will feel better in the morning. She has gone to ICU at Sydney Kids tonight but will return to her room on the ward in the morning. Charlie is scheduling an MRI for tommorrow to try and find out why she is not better yet. He is talking about taking her back to surgery next Monday to again try and breakthrough the wall of the cyst. A large cyst is occupying the space where the tumour was and could be obstructing the flow of CSF causing her hydrocephalus. The cyst is a sac filled with CSF which does not communicate with the ventricles and is preventing her brain from returning to its normal position. We should get some pathology back on the VP shunt late tomorrow.
Hopefully, some good news coming tomorrow!
Monday, November 21, 2005 5:52 PM CST
Dani-Ella went into to surgery at 2.45pm and came out at 5.45pm (Qld time). Her anaethetist was once again Dr Peter Isert (Charlie's anaethetist of choice) who did such a wonderful job in controlling her bleeding, etc in her last surgery in Sydney. Dr Teo removed Dani-Ella's shunt and it has gone to pathology. He attempted an Endoscopic Third Ventriculostomy but told Richard this procedure went poorly. He had to stop due to bleeding. Instead he "punched" holes through other areas and drained some CSF. Her surgery was all done endoscopically. He also placed an External Ventricular Drain (EVD) on the right side. Richard said she's now got a mohawk!
When she woke up from surgery she was doing extremely well. She was talking and moving and has had some jelly and juice. Richard said he feels she has improved since this morning. She is on one-on-one nursing care with hourly obs in C1 South which is the ward next to the operating theatres. She will return to her room on the POW Private Kids ward early Tues morning.
The plan is to observe her for a couple of days and do another MRI scan. If the surgery has not fixed the problem Charlie will take her back in to try again. As a last resort, he will re-insert a shunt.
Sunday, November 20, 2005 6:49 PM CST
The kids and I caught the tilt train the Brisbane on Thurs am. Thanks Lisa for taking us to the train station at 5am. We had a wonderful trip and were able to watch the new Herbie movie on the way down. We then caught a taxi to the hospital from Roma Street. On Friday, it was the big party day at the hospital where all the wards have a different theme and they decorate and dress up. They are then judged and awarded places. I think the Broncos or Qld Reds judge. The theme of the hospital school was "cowboys and indians" so the kids were all dressed up and then taken on a tour of the hospital to see all the wards. Jaiden was "Woody" and walked around saying "Howdy Partner" all day. It was great fun for them. Two of the rehab doctors hired Batman and Robin costumes and all the kids thought it was so cool.
We then had lunch with Emmelyne's teacher Mrs Mead who happened to be at the hospital that day. After lunch Emmelyne went back to school to watch a video and the rest of us went back to McConnell Ward to wait for the doctors to discharge Dani-Ella and see the rehab therapists.
Dani-Ella was discharged from hospital late Friday afternoon and we arrived home on Saturday. As when we left hospital, she is still vomiting, complaining of dizziness, has an unsteady gait, her speech is dysartharic and she is lethargic. Everytime she moves she cries at the pain in her neck and back. She continued to be very unwell and late Saturday night I emailed Dr Charlie Teo in Sydney. His reply email within the hour was “You need to get down to Sydney ASAP. She has a shunt infection until proven otherwise or loculation. Either way, I am not happy with what is happening up there. Tonight if possible, otherwise tomorrow.”
Accordingly, I was able to book Richard & Dani-Ella on a flight to Sydney from Hervey Bay on Sunday afternoon. Our friend (Sydney Sharon) kindly picked them up from the airport and took them home for tea before dropping them at Randwick Ronald McDonald House.
Again, we witnessed God’s provision and know that He continues to watch over our family. Last week, we received an unexpected donation for Dani-Ella from a St Mary’s family for $280 – the cost of the airfare to Sydney was $262. The fact that Richard was able to get a flight and was able to get a room at RMH at the last minute is in itself amazing. It was important to get on that flight as there were none today.
Dani-Ella was admitted to the POW Private Hospital this morning and is currently awaiting assessment by Charlie – he is in theatre this morning.
Update - 11.30am
Richard phoned me to say that Charlie has just been to see Dani-Ella. Is 99 percent sure that she has a shunt infection. As it takes 3 weeks to culture for infection he is taking her to surgery tonight to remove the shunt and perform an Endoscopic Third Ventriculostomy. He he hoping that by doing this she will not need to have the shunt reinserted. He will continue to try difference things but will put in another shunt if that is what is needed. We feel she is in the best hands!
The following is a summary which I am including here simply as a historical account for OUR future reference.
30th September Dani-Ella fell over at school and fractured her arm – greenstick fracture of the distal radius treated locally
3rd/4th October Visiting visual impairment and physical needs specialists saw Dani-Ella at
school and commented on her fatigue and episodes of vagueness
5th October Dani-Ella vomited at school in the morning
7th October Royal Children’s rehab team visited local hospital – we advised her physio Chris she has an unsteady gait and she vomited during speech therapy with Sarah
9th October Dani-Ella vomited
12th October Dani-Ella slept for over an hour at school – her teacher commented that she is not interacting with the other children and has difficulty walking around the classroom
13th October Dani-Ella slept for over an hour at school and had to be woken up for lunch. We noticed she is not eating or drinking as much as usual.
14th October Dani-Ella vomited at school in the morning
15th October Dani-Ella vomited in the morning
16th October Dani-Ella slept all afternoon
18th October Dani-Ella vomited at school in morning. Picked her up and took her to Hervey Bay Hospital for a Head CT as per Paediatrician’s advice. She was denied a scan and sent home for observation.
20th October Dani-Ella vomited at home and then again at school. Phoned Royal Children’s, Brisbane and Dr Vonau told us to bring her straight down. She had a Head CT which showed acute hydrocephalus. Dr Vonau immediately inserted 2 EVDs in the frontal lobes.
21st October MRI scan of brain and spine showing hydrocephalus
26th October Dani-Ella had shunt surgery – the shunt inserted on the left side. CSF taken for testing on 20th October showed “degenerative atypical cells suspicious for neoplasia”. After this surgery Dani-Ella was the best we had seen her in a long time.
31st October 1 week Block of intensive rehab at Royal Children’s, Brisbane
1st November MRI Brain. Report says “Comparison with recent MRI 21/10/05 shows interval removal of 2 previous frontal shunts and insertion of a new VP shunt via left posterior parietal burr hole. The traverses posterior aspect left lateral ventricle and ends with its tip close to midline within the midbody left lateral ventricle. There remains mild asymmetrical dilation of lateral ventricles (left larger than right) and slight prominence of the third and fourth ventricles and CSF space around the pons and medulla but with definite interval reduction in ventricular size.”
8th November We noticed a large “bump” appear on Dani-Ella’s head over the shunt valve
11th November We noticed Dani-Ella’s unsteady gait had returned and then she vomited at school in the morning. Our GP noted she had a low grade fever. She was complaining of dizziness, a sore neck and a sore tummy. He referred a Head CT which was done that afternoon. The report says “There is marked dilation of all ventricles, despite the presence of a left ventricular shunt which appears to be in a satisfactory position…definitely moderate to marked hydrocephalus, suggesting shunt malfunction.”
12th November Dani-Ella admitted back to Royal Children’s, Brisbane. X-rays were done which showed the shunt was working and when Dr Vonau pressed on the valve she said it all looked ok. The report says” Left parietal shunt is noted. No shunt tubing disconnection or breakage is evident. The tip of the shunt tubing is seen in the pelvis.
13th November Dani-Ella vomited overnight in hospital
14th November Dani-Ella had an ultrasound of her abdomen. The report says “The VP shunt tubing was traced from within the pelvis and up into the right upper quadrant and down into the pelvis via the right paracolic gutter in a loop. A small amount of free fluid is seen within the abdomen, but no collection was demonstrated. The tip of the VP shunt has not been confidently demonstrated, as it was obscured by overlying bowel. The passage of the tubing does not correlate with the position seen on the recent abdominal x-ray suggesting that the tubing is mobile within the abdomen.”
15th November Dani-Ella vomited in hospital. She was prescribed Zofran Zydis wafers 4mg for the vomiting which we give to her every morning.
16th November A CSF sample was taken from the shunt to check for infection. The CSF was found to be clear of infection but some increase in white cells was noted.
18th November The neurosurgical team discharged Dani-Ella from hospital as surgically there is nothing to be done. The rehab team saw Dani-Ella before we left and were concerned as they noted she was obviously in pain and there had been a marked deterioration in her speech.
Wednesday, November 16, 2005 5:49 AM CST
Dani-Ella has some fluid taken out via the shunt this morning to test for infection. The preliminary findings were that it is clear...thankyou Lord! You don't want to know what will happen if they find the shunt is infected. The gastro doc came and saw her today and prescribed some anti-nausea meds. They are thinking that damage to the hypothalamus may be causing the vomitting, tummy pains, etc. She still has moderate hydrocephalus and is only 3 weeks out from shunt surgery so I think it's probably a combination of things. Hopefully this will eventually resolve.
Richard texted me late this afternoon to let me know that they want Dani to stay in Brisbane until the weekend as the fluid will take about 3 days to see if anything "grows". So, me and the other 2 kids are catching the tilt train to Brisbane at 6am tommorrow morning for some family time. I have a very excited 4 yo boy. Richard has a self contained unit so there is enough room for all of us to stay at RMH. We hope to be home on Sunday and hope that Dani can come back at school next week which will be her last week of school this year. The kids can go to the hospital school while they are in Brisbane - much to Emmelyne's disgust.
We have to be back home next week for the dance concert which is on next Saturday. Emme has practices every night next week.
Sharon.
Tuesday, November 15, 2005 3:55 AM CST
Richard & Dani-Ella are still in Brisbane. Dani was to be released from hospital this morning but she vomitted and they wouldn't let her leave. So far, all the tests that they have done have come back clear. The shunt seems to be working at both ends,ie. the valve in her head is functioning and there are no cysts in her abdomen. However, she is still vomitting, lethargic, her gait is "off" and is now complaining of a sore tummy. Richard managed to get "night release" so Dani will get a good night sleep with him at RMH tonight. The NS will take a sample of CSF tommorrow to test for infection. Depending on how much longer they need to be in Brisbane for, I am thinking of taking the other children down tomorrow and staying til the weekend. The family split has become unbearable - I ran a red light last week and locked myself out of the house this morning (thankyou to our neighbour Al who rescued me by climbing his ladder to a top floor window) and Richard has now been hypertensive for a few weeks.
Sharon.
Sunday, November 13, 2005 0:08 AM CST
Dani-Ella is still in McConnel Ward at Royal Children's. Richard is waiting for the NS to come around to answer our questions. Our concern is that the shunt is not draining the CSF quickly enough. If this is the case, she will need another surgery to replace the valve. When they do the initial surgery they "guess" at what valve to use and then adjust it if necessary. We are also concerned about a large "bump" that appeared in the last week over the shunt valve. Some advice I have gotten is that this could be CSF. This could happen if there was a build up of intra cranial pressure (ICP) again. It is also possible that the shunt became partially blocked and then resolved itself. So many ifs but all we can do is take her to Brisbane if we are concerned. Our GP even phoned us Fri night to make sure we were taking her to Brisbane. The neurosugical team already think we made the wrong decision in going to Charlie Teo and now I'm sure they think we are neurotic parents!
Dr Vonau came down last night after surgery and told Richard the X-rays looked fine and pressed on the shunt valve in Dani-Ella's head and said it feels ok. I told Richard to find out how to do this.
Sharon.
Saturday, November 12, 2005 3:19 AM CST
Richard took Dani-Ella back to Royal Children's in Brisbane today. After such a fantastic week at school, she started having some subtle symptoms of hydrocephalus again on Friday. She had a CT scan late Fri afternoon which showed moderate to marked hydrocephalus with suspicion of shunt malfunction.
Richard booked in to RMH around 4.30pm this afternoon (we don't know what we would do without the wonderful ladies at RMH who found a room for Richard & Dani-Ella at late notice) and then took Dani across to the Children's Emergency. She has had another X-ray and they are now waiting for the docs to come out of surgery. She's not allowed to eat and she is hungry!
Please say a special prayer for Dani-Ella tonight.
Sharon.
Friday, November 4, 2005 3:20 AM CST
We're home!
Monday, October 31, 2005 5:31 PM CST
Dani-Ella has gone to hospital school this morning so I have come back to RMH for a couple of hours. After school we have speech therapy then OT then physio then an MRI scan.
After lots of nagging the various doctors and nurses yesterday, Dani-Ella eventually managed to get her stitches out (there are still some more to come out early next week) and her cast off her arm. I was so pleased that her arm went straight back into the extended position at her side. The therapists had thought she might have elbow problems from it being in flexion for so long.
We hope to be home and back at school next week.
Sharon.
Saturday, October 29, 2005 9:59 PM CDT
Dani-Ella was allowed to leave hospital yesterday afternoon. The NS came around about 1pm and said that as she looks good we can go to Ronald McDonald House. We all stayed at RMH last night and came to Maroochydore this morning. Dani-Ella and I will return to Brisbane this afternoon and everyone else is going home.
We have a busy week with rehab, plaster clinic, stitches out, MRI scan, to name a few. We will try to fit some hospital school in as well.
Thanks to Margaret and all the dancing mums for the wonderful package they sent down. The kids were all over the moon with their gifts and they have been kept entertained over the weekend.
I forgot to post last time about the Australian Idol visit to the Royal Children's Hospital. On Friday the 5 Idol finalists visited the ward. We met Dan, Daniel and Kate. Daniel sat with Dani-Ella and played Bingo. We took photos for show and tell. We will have to watch Idol now to see exactly who we met..we had no idea!
Sharon.
Friday, October 28, 2005 7:13 PM CDT
Dani-Ella is still in hospital. Her temp is going up and down but all blood tests and CSF specimens have come back clear for infection. If we can't get discharged we are hoping for "day release" over the weekend. Yes, it is starting to feel a bit like jail...
She is doing well. She was walking around yesterday as she is no longer connected to any IVs or drains. The x-ray of her broken arm showed that it has healed well and the cast is coming off on Monday..yah! We will be down at the plaster room first thing.
Mum and Dad are bringing the kids for a visit today. Once again we don't know what we would do without Mum & Dad to keep the kids in Maryborough in their usual routine. The plan at the moment is that Richard will go home with Emmelyne & Jaiden and Mum & Dad on Sunday. I will stay in Brisbane with Dani for hopefully outpatient rehab next week. Her stitches can't come out for 10 days after surgery so I guess we will have to hang around until then, but so far the shunt is working and she has improved dramatically. Dr Vonau is going to show me how the feel the valve in the shunt through Dani's head to tell if its working...not something I really want to know but she says its important as no one in Maryborough will really be much help in the event of shunt failure.
Hey Mick & Mel, sorry didn't email you but left your email address at home...we left is quite a rush with about 3 changes of clothes each and not much else. Hope everything is going well in the UK. Email me all your news. Hope the kids are well.
Love Sharon.
Wednesday, October 26, 2005 9:19 PM CDT
Well Dani-Ella had her shunt surgery yesterday. She was awoken at 3am for breakfast as she had to fast from 4am with an expected surgery time of 11am. We have been around long enough now to know that when they say 11am they really mean 2pm and this is what happened. Dr Vonau's assistant told us at 4pm that the shunt surgery went extremely well and Dani-Ella was back on the ward by 5.30pm. She was really sore. She has an incision on the back of her head where the shunt was inserted and in her abdomen where the shunt is draining. When she got back to her room she started to cry. When we asked what was hurting she said "I'm hungry". She was allowed to eat at 6.30pm. She has been on 1/2hr neuro obs through the night. She has been on hourly neuro obs since her EVD surgery last Thursday so she is quite tired just from being woken every hour. Hopefully these will go to 4hr today.
She is having her right fractured arm x-rayed today. Hopefully it is really to come out of the cast..what a relief that will be. She has had the cast on her right arm and drips in her left which makes things very awkward.
We are stilling hoping for her to be discharged over the weekend. She needs to get the stitches out so it will depend on what the NS says. Thankyou to everyone praying for our girl we feel so blessed to have so many people thinking of us. A special thankyou to Year 1 at St Mary's for the friendship flowers..Dani-Ella was so excited to look through them and see all her friend's names.
Richard & Sharon.
Monday, October 24, 2005 6:45 PM CDT
Hi everyone,
Thanks to all who are praying and thinking of us. Dani-Ella is doing great. She obviously is feeling much better now that some pressure has been released in her brain. She still has 2 EVDs draining CSF from her brain but she has been sitting up and playing games. The EVDs must be kept at 15cm above her head at all times so you can imagine how frustrating this can be. Everytime she wiggles the nurse has to check the levels and the valve must be turned off whenever she moves from lying down to sitting up, etc. She still has one-on-one nursing care so we are quite relaxed as the nurse is not allowed to leave her room (we have a double room which is alot quieter than the 6 bed rooms). We have had lots of visitors to keep her entertained and she is having mild therapy whilst in hospital.
Dani-Ella is having shunt surgery on Wednesday. Will update after surgery.
By the way, we are staying at Ronald McDonald House and have been lucky enough (blessed!) to get a self-contained flat.
With love from Richard & Sharon.
PM UPDATE
Dani-Ella has spiked a temp this afternoon. This could indicate infection and she is being closely monitored. There is a high risk of infection after a VP shunt surgery anyway, so as you can imagine we are quite concerned. Hopefully, surgery will go ahead as planned tommorrow morning.
If all goes to plan, Dani-Ella should be discharged over the weekend and we will stay for rehab next week. Her cast will be taken off her broken arm on Monday.
Our prayers are with the Cartledge family as we have received news that Ps David has gone to be with Jesus. Ps David has been battling a malignant brain tumour since earlier this year. He was in hospital in Sydney at the same time Dani-Ella was under Charlie Teo's care.
Saturday, October 22, 2005 6:28 AM CDT
Last Tuesday I took Dani-Ella down to Hervey Bay hospital (1/2 hr drive) for a CT scan on the advice of our Rehab Ped at Royal Childrens as she had some symptoms that could have been caused by a build up of pressure in her brain (intercranial pressure). She was assessed and we were sent home without a scan. She continued to deteriorate and after phoning Royal Childrens again on Thursday morning we were told that Dr Vonau (Neurosurgeon) said to bring Dani-Ella down immediately. We picked the girls up from school at 3pm and headed straight to Brisbane. We arrived at the Royal Childrens at 6.30pm and were taken straight in to be assessed. She got a drip straight away and was whisked away for an emergency CT scan. Unfortunately, the scan showed acute hydrocephalus. Dr Vonau was in surgery at the time so she was able to look at the scan immediately. She was not happy to leave Dani-Ella untreated so she performed emergency surgery - it was 10pm. Dr Vonau inserted two external drips (EVDs) into Dani's brain. This enables the CSF to drain thereby reducing pressure in her brain. Her CSF is being tested for infection and tumour cells. After surgery she was taken to the PICU but has now returned to one-on-one nursing care on McConnel Ward. The MRI scan on Friday also showed hydrocephalus. There is no obvious area of blockage so nother else will be done until after the "big" meeting on Monday morning. Her Neurologist Dr Appleton showed us the scans on the computer. All ventricles were clearly very enlarged. Dani will need some shunt procedure next week. I expect to be in Brisbane for at least a couple of weeks. Dani must stay in bed but she is alot better then what she was on Thursday. She is stronger, has stopped vomitting, is more alert, speaking well and started eating/drinking again.
Monday, October 17, 2005 1:47 AM CDT
Life continues to be busy and eventful. It was nice to catch up with the Brisbane pediatric rehab team in Hervey Bay, however it was just too much for Dani-Ella and she was sick during the session. She has been vomitting on and off for a couple of weeks and we are hoping it will resolve itself. There seems to be alot of stomach viruses going around town. Her broken arm is just a pain in the b**. It has really affected her walking and put her off balance. We think this is probably making her dizzy and that with the pressure of the sling around her neck is hopefully what is making her feel ill.
Dani-Ella is also very fatigued. Again we are hoping this is due to the weight of the plaster on her broken arm and the extra effort it takes her to walk around. She is sleeping almost daily at school. Her school continues to give her special care. She is really into learning sight words at the moment.
After almost having a nervous breakdown over her not getting speech therapy for 5 weeks, she had her 1st session with the local speechie last week and it was fantastic. Dani had such a good session and the speechie was very impressed with her and told me she sees lots of potential! She will have 2 sessions per week and will also get 3 sessions per week of "speech games" with her Teacher Aide at school. We are so happy at how things have finally worked out.
We return to Brisbane in 2 weeks time for intensive therapy at QPRS (Qld Pediatric Rehab Service) at the Royal Childrens. Unfortunately, Dani-Ella's usual speechie has gone on maternity leave and we will only have a fill in for this time. However, we are mainly going for physio/OT. They will take Dani-Ella's arm out of the plaster at 9am and we start physio/OT at 11am, after an Xray.
Please pray that Dani-Ella's walking will improve after the plaster is taken off otherwise she will need a series of plaster casts on her leg to stretch the calf muscle. This is something we don't want to have to do over the summer holidays!
Thursday, October 6, 2005 1:22 AM CDT
We continue to feel God's hand upon our family as we trust in Him and believe that He has a purpose for everything.
Firstly, the physio rang us to cancel Dani-Ella's appt last week (she has only had 1 appt in 5 weeks) as she decided she wouldn't come to Maryborough as Dani was her only patient on that day. During that phone call we found out that an old friend experienced in pediatric physio had returned to work at the Maryborough Hospital for one day per week. This lady came to our home and assessed Dani-Ella and gave us lots of ideas for therapy that can be intergrated in normal family life.
Secondly, we received word this week of the funding Dani-Ella's school will receive for her. I do not feel to disclose the exact amount but will say that it is above and beyond what we had expected! This funding is for a Teacher Aide for Dani-Ella and it is for a substantial number of hours per week. I think we were all shocked. I am hoping that some Teacher Aide time can be used for speech therapy everyday at school. Dani-Ella attends a Catholic School and everyone has been wonderful. Our special thanks to her teacher Mrs Rosin, her principal Mr Ward and her case manager Karen Jansen. There are lots of people (over 15 different specialists and educators) working together on her behalf and we appreciate all the work you are doing for her.
Richard and I have been in meetings most of today with the school, Ed Qld AVTs, Cath Ed SP and some of Dani-Ella's rehab team from Brisbane. Various reports were presented and her IEP was written. Two important goals were set today - one under physical impairment (PI) and the other under speech & language impairment (SLI). It got to a point that I became upset with all the talk of what she couldn't do and had to remind everyone that she is only 4 months out of a 14 hour brain surgery for a tumour that occupied 50f her brain! Her mental and physical fatigue is quite obvious and we don't want too high of an expectation placed on her. After saying that, she is really enjoying school and wants to be there as much as I will let her.
Dani-Ella has had her arm put in a plaster cast yesterday for 4 weeks. Poor little thing..it has gotten so hot. She had another x-ray taken this morning and her bones appear to be in the proper place. After the cast comes of I will need to take her back to Brisbane for more rehab and probably get a splint made to protect her arm for a bit.
We are off to Hervey Bay Hospital tommorrow for various rehab appointments. As I mentioned, the Brisbane rehab service is in the District for a couple of days. We are EXPECTING good news on her progress.
Sharon.
Sunday, October 2, 2005 5:03 AM CDT
Well it's been back to the real world after a lovely break at Woodgate. We were lucky that the weather was nice and we were able to swim. Dani-Ella did not want to go near the water but was quite happy sitting on the beach building sand castles and decorating them with shells. See did do a block of swimming lessons in the first week of the school holidays. She did quite well, developing a new one armed freestyle.
She has started Term 4 at school. Things have been going really well and then...Dani-Ella fell over at school and broke her arm. So, she will be in a plaster cast for 4 weeks. It was only a green stick break luckily. I phoned her OT in Brisbane straight away and she said it is not unusual for the kids to fracture their hemiplegia arm.
We have a big week this week with local therapy Mon and Tues and then the Brisbane rehab team are coming on Thurs and Fri. The therapists are coming to school on Thurs and we have meetings with them and the school to write her IEP. We then have therapy sessions on Fri and will decide if we need to go to Brisbane. We have been upset that Dani-Ella has not been receiving very much therapy locally - no speech therapy yet, only 1 session of physio and 2 sessions of OT in the last 4 weeks. However, we see that being back at school has been good and she seems more alert. We have been doing a home programme with her as much as we can..but we are not professionals! I am looking into some other therapy options including behavioural optometry and the Tomatis listening method.
Anyway, thanks for all your prayers whilst we were not well. Things have settled down now..apart from the broken arm drama.
Sharon.
Monday, September 12, 2005 1:36 AM CDT
Dani-Ella and I have been enjoying our time back home. We were offerred more time of intensive therapy in Brisbane but have decided it's more important at the moment to spend some family time at home. We have had many people use the words "natural healing" to us in the last couple of weeks and believe God is trying to tell us something! The last week we were in Brisbane both Dani and I were sick. The gastro bug was going round the Ward and obviously we managed to pick it up. Jaiden was also sick with it and was admitted to Hervey Bay Hospital for 3 days as he got dehydrated. Richard's blood pressure went through the roof and that's when we decided not to go back to Brisbane at the moment. I must say a BIG thankyou to Mum and Dad for being here with Emmelyne and Jaiden when I can't be (I know how traumatic it must have been to have to take Jaiden to hospital!!!). It has meant that the kids could continue their normal activities. Also thanks to Nev and Cass who have also been here to help and lend Richard their car when he has needed it.
Dani-Ella had a week at school which she loved. Her teacher told me that she notices improvement in Dani every time we come back from Brisbane so I was greatly encouraged by that. We had our first appointments with the local physio and occupational therapist last week and I have to say I wasn't overly impressed. As they are not pediatric specialists they don't have the lovely way with Dani-Ella that the team in Brisbane have.
Hopefully, Dani-Ella was put on the Cath Ed data base last week which will give St Mary's funding for teacher aide time for her next term. She should be entitled to 5 hours immediately then 10 hours once the ascertainment process is completed. I believe we are now going for ascertainment under Physical impairment (PI).
All the kids started swimming lessons today...in a heated pool at 8am everyday this week. Our pool is still too cold to swim in. We are hoping it will be warm enough at Woodgate next week to swim.
It is Jaiden's 4th birthday today and he had a lovely little afternoon tea with some of his kindy friends. He wanted a rocket cake which I made for him and put sparklers on the bottom for "take-off". He was very impressed with that!
Thanks everybody,
Sharon.
Saturday, September 3, 2005 7:46 PM CDT
Just a quick message to let everyone know that Dani-Ella and I are home. We have finished our block of intensive rehab in Brisbane now and will continue therapy locally. The Brisbane team wanted us to come back for a few more weeks particularly for speech therapy but Richard and I have decided that we can't do it anymore and need to have some normal family time.
The plan at the moment is that we will go back to Brisbane in late November for more rehab, MRI scan, eye clinic, Neurologist appt, Neurosurgeon appt.
I am exhausted so will post some more in a couple of days.
Sharon.
Friday, August 26, 2005 11:34 PM CDT
Not much to report - we are home for the weekend and then head back to Brisbane on Monday for the week. We have had another exhausting week at rehab including a Neuro-Psychologist Assessment. The purpose of this assessment is to obtain extra funding to ensure Dani-Ella's educational requirements can be met, ie. Aide time. Her words were "it was like putting a round peg into a square hole". Dani doesn't seem to fit in anywhere...Dani has an Acquired Brain Injury but there is no category for this. Quite distressing for us is that it is likely she will need to be labelled "intellectually disabled" in order to meet the requirements of ascertainment and receive the extra support she needs.
Her OT and physio continue to be happy with her progress, so much so that our sessions will be reduced from everyday to just a couple of times in the week. She is still improving due to natural healing, also. She had a session of hydrotherapy last week and absolutely loved it. She had fun trying to splash the therapists. The water was 34 degrees and as she was sick the day after I wonder if there was some bug in the water??
Saturday, August 20, 2005 11:16 PM CDT
Hi everyone,
Well Dani-Ella and I are just about to leave for Brisbane for another 2 weeks of rehab, will be home for the weekend though as it is Dad's 60th birthday.
We are EXPECTING great improvements again this week in Dani-Ella.
We had quite a good transitional meeting with Dani's school on Thursday. There were lots of people involved and an action plan was formulated.
Thanks Alison for helping out with our Jai! I think he has more fun being with Nicky anyway.
Sharon.
Monday, August 15, 2005 7:12 AM CDT
Well we escaped Brisbane for another week and Dani has settled into another week at school. Her school has been fantastic in supporting us and transitioning her back home. We have a teleconference on Thursday with a number of people, including the Brisbane Rehab Team, St Mary's and other organisations regarding Dani-Ella's return to school for Term 4 and the support available to her. As everyone is probably aware, funding and services available for disabled children in country towns is very disappointing.
Dani-Ella was invited to BJ's birthday party on the weekend and they all went bowling. Just 2 1/2 months after a 14 hour brain surgery our girl was there throwing a ten pin bowling ball down the lane with her left arm.
Dani-Ella and I return to Brisbane next week for 2 weeks of intensive rehab. Mum and Dad are able to return having both recovered sufficiently from their surgeries. I feel happier to know that they are here to help Richard when I can't be.
Looking back, our testimony of the last 3 months is one of God's faithfulness, blessing and provision to our family.
I was also greatly encouraged to read an abstract "The Spectrum of Long-term Epilepsy-associated Turmours: Long-term Seizure and Tumor Outcome and Neurosurgical Aspects" where data was analysed from 207 patients with intractable epilepsy who had a greater than 50 percent resection of their tumours. The results of the clinical research was that after 5 years, only 4 percent of patients had tumour recurrence and patients with astrocytomas of WHO grade 11 or 111 showed a 10 year survival of 90 percent. Further 82 percent of patients were seizure-free after surgery.
Please pray that Dani-Ella's endocrine system has not been compromised by the tumour. Her cortisol and IGF (growth hormone) levels are being retested after the last blood test showed they were low.
Regards,
Sharon
"It gives me a deep comforting sense that things seen are temporal and things unseen are eternal" - Helen Keller.
Thursday, August 11, 2005 5:28 AM CDT
Dani-Ella and I returned home today late in the afternoon after spending the week in Brisbane for some more rehab. The PT & OT were over the moon with her improvement in the 2 weeks we were home and I attribute this to Richard playing so much cricket with her. Her speech and language is still a major concern for us. The testing done by her speechie on Monday indicated her language had gone downhill in the 2 weeks without daily therapy. Her opthamologist believes her CN palsy and right hemianopia is slightly improved but she now has a right head tilt (as a result of the 4th nerve palsy) and a right head turn (as a result of the hemianopia). He wants us to patch her right eye for 4 hours a day to make the left one work more. There is now some question as to how good the eye sight in her left eye is. Dani visited the audiology clinic also during the week. Her hearing test came back normal. Her endo blood tests came back generally within normal range but they want to run them again as her morning cortisol in particular was very low within "normal".
As I am feeling overwhelmed with the amount of work each therapist wants me to do with Dani, I have asked that they get together and schedule 1/2 hour of set tasks per day for me to follow. We return to Brisbane in a weeks time for another 2 week block...(sigh).
It is Dani-Ella's 6th birthday today. All the therapists in Brisbane gave her a party including cake and presents. We also had cake with Aunty Cass and cake again after dinner.
Sharon.
Monday, August 1, 2005 8:46 PM CDT
Dani-Ella has been back at school for morning sessions only for a week. She has coped well but gave us a scare when I picked her up on Friday with what we believe was a faint. We watched her closely and she has been fine ever since. We are hopeful in was a combination of overheating and tiredness after a big week home. She is staying at school this week until 1pm and has started homework and home reading.
Dani-Ella & I must return to Brisbane on Sunday for 4 days/week for at least 2 weeks for post-botox rehab. Richard will stay home with Emmelyne & Jaiden due to some dramas with Mum & Dad who are not able to come and look after them. He will still be able to go to work as I have organised some daycare for Jaiden. I feel I can post about Mum as most of Maryborough already know! Mum feel over a couple of weeks ago and fractured her kneecap. She had surgery to have it wired back together. She is unable to move around very much (she is on crutches) and is still in pain. Dad also needs to have surgery on his leg at the end of this week for a serious condition recently diagnosed.
Emmelyne performed in Wakakirri last week. Her school came 2nd. Richard & Dani-Ella went to watch as Richard painted the sets. Emmelyne is in the local Eistedfod this week. She is playing violin in both an orchestral entry and also doing a solo piece. She performed in a pre-Eistedfod concert on Sunday and I was so proud of her. She was upset because she made 1 mistake....what a perfectionist!
That's all for now - our place is just crazy at the moment. We are so looking forward to weeks holiday at Woodgate in September. Continue to pray for us.
Sharon.
Saturday, July 23, 2005 5:05 AM CDT
Well, Dani-Ella and I are now home for 2 weeks. We had a very busy week with numerous specialist appointments and day surgery as well as the usual couple of hours of rehab per day. We saw our Neurologist, Neurosurgeon, Pediatrician and had the blood tests for Endocrinology. Dani-Ella's next MRI scan is scheduled for December and will check for residual tumour or regrowth.
On Friday, Dani-Ella was admitted to the Day Surgery Unit for botox injections. We decided at the last minute to have them done under GA. We made this decision as she had botox injected in muscles in both her arm and her leg and it also required the injection of muscle stimulants in order for the Pediatrician to locate the correct muscles. It was only a 20 minute procedure and she was back on the ward awake and eating within a hour of me taking her to theatre. She suffered no after effects from either the botox or the GA. We return to Brisbane for another block of intensive rehab in 2 weeks which is when the effects of the botox peaks. It then seems likely at this stage that we will be able to access rehab weekly locally.
Dani-Ella is going back to school on Monday, just for the morning session at this stage. Dani has had 2 major brain surgeries within 12 months and she will tire easily for some time. Her school needs to apply for teacher aide time for her as the QPRS rehab team have been very particular about what she will require. She needs to be "ascertained". She basically needs an aide with her for her safety when in the class room due to her unsteadiness from the hemiparesis. Also, with the loss of peripheral vision she tends to bump into things at the moment.
It has been 12 months (22 July 2004) since our world was turned upside down when Dani-Ella was diagnosed with a brain tumour. We couldn't have gotten through the last year without the support of our family and friends...."We are ordinary people who have found themselves with a child and life not necessarily of our choosing but we continue to do the best we can whith what we have. It is survival and desire to be happy that drives us, not bravery or martyrdom."
Happy Birthday Nan!
Love Sharon.
Monday, July 18, 2005 7:41 PM CDT
Sorry I haven't updated for a while but I am having trouble updating from our computer..I'm doing this from RMH.
This is our last week of rehab. On Friday, Dani will get Botox and then we will come home for 2 weeks. We suprised the Year 1's (& Mrs Elmer) last Friday when Dani-Ella stopped in for a quick visit. Dani-Ella is now walking independently with her splint. Her loss of peripheral vision is quite obvious as she runs into things on her right side when she walks around. This hopefully will improve with time as she learns to compensate. She has regained some strength and movement in her right arm. She still hasn't much use of her helping hand.
Anyway, hope to catch up with everyone in Maryborough soon.
Sharon
Tuesday, July 5, 2005 2:07 AM CDT
We were able to sneak home for the weekend and after 5 weeks it was good to sleep in our own beds again. We went to Church and it was great to see everyone and Dani-Ella had fun catching up with her friends too. We were given a cheque being donations collected while we were away and we would like to thank everyone at New Life Centre for your support. More important to us though has been your prayers for Dani-Ella. We felt the comfort and peace of you all interceding on our behalf.
Dani-Ella and I returned to RMH on Sunday. We suprised everyone at rehab on Monday with Dani-Ella walking independently. We still stay close but she does a really good job at walking and her PT Chris was quite impressed. This week has seen a change in emphasis from Dani's leg to her right arm. Eventhough she has movement in her arm it is now called her helping arm and dominance will change to her left side. Her OT Megan is helping her to learn to be left handed.
The good news is that we can come home in 3 weeks! The rehab team are still concerned with the level of muscle spasticity and are talking botox injections. This means we can come home for 2 weeks whilst the botox takes effect then come back for another block of intensive rehab (Cathie and Helen I would like your opinions on botox). So, Dani will be back at school soon, hopefully wheelchair free!
Tommorrow is our favourite day as Maggie, Dani's music therapist will be there. We think the music therapy has really helped in Dani's recovery and it is so much fun - for everyone, even the therapists. Dani also went to hospital school this morning for the first time. She told me to go away.
Dani-Ella saw the eye doctor last week and confirmed what we already knew. Dani's eyesight is perfect but she has hemianopia. This is loss of right peripheral vision which is consistent with her hemiparises/hemiplegia. She also has partial damage to her left 3rd & 4th cranial nerves. We are seeing the Opthalmologist next week as he specialises in nerve palsy.
It looks like we will be home again this eekend. I need to finalise Emmelyne's Wakakiri costume. Thanks Jill for helping out with this.
Sharon.
Monday, June 27, 2005 9:20 PM CDT
Hi, sorry I haven't updated in a while but all we do is go to rehab, eat and sleep at the moment. It has been great to have Emmelyne & Jaiden with us since Saturday. I'm sure Mum & Dad are enjoying a little break! We may be coming home for the weekend and then I will come back with Dani-Ella on Sunday afternoon. Otherwise, Richard & the kids will come home on Sunday as school and kindy starts up again. Dani-Ella won't be allowed to come back to Maryborough permanently until she can walk safely. Then we will be able to come home for 4 days and be in Brisbane for 3 days of therapy...looking forward to that.
Dani-Ella is continuing to improve (of course) and the therapists are happy with her. She will be having an eye test and hearing test shortly and possibly will see an Endocrinologist (part of her hypothalamus was removed during surgery). She is happy and eating and sleeping well. She loves going to therapy for which we are thankful.
Thinking of Jeff & Alison today...our prayers are with you. We will come and visit as soon as we can.
Love Sharon.
Wednesday, June 22, 2005 5:56 AM CDT
I have very exciting news (for us anyway) to report tonight..Dani-Ella is starting to move her right arm. She can lift it from the shoulder as well as clench her fingers. We believe this is all due to the wonderful rehab she is receiving. Today she had the sole attention of 3 therapists for 1 hour - a physio therapist, occupational therapist and music therapist. She then had a sleep and was back for speech therapy. She does the same tommorrow. Everyday we see a little bit more of our Dani-Ella come back to us. Richard has been wonderful and is really into the "therapy" which is basically playing. We have also established a good rapport with her therapists which of course helps alot.
Dani was exhausted after her visitors yesterday and was yawning all day. Thanks to Tracy and Jill for bringing the kids over for a visit - it was a very enjoyable afternoon for all of us.
Thanks to Mrs Rosin and the Year 1s for the parcel they sent down. We are going to get some blue tack to stick the hands up all over the room. I will be in touch when school starts and the Rehab team should also contact the school shortly.
Sharon.
Monday, June 20, 2005 6:36 AM CDT
Hi everyone,
I have just been home for a day and I'm staying with Mum & Dad tonight. Emmelyne & Jaiden have been staying with Mum & Dad since they flew back to Qld. They will stay at Maroochydore during the school holidays and then go home when school & kindy starts again.
For those of you who saw Channel 9 News last night...it was Dani-Ella on TV for the segment and the end about the hospital kids seeing a special screening of Madagasca yesterday.
We are looking forward to catching up with some of our friends tomorrow afternoon. I'm sure Dani will love to see Lucy and Stephanie.
Sharon.
Saturday, June 18, 2005 4:54 AM CDT
Hi everyone,
We have finally escaped the hospital and have been discharged to Ronald McDonald House (RMH). We have a wheelchair access room but it looks like we can move to a self-contained unit on Tuesday. This means we have our own cooking facilities and a seperate lounge area. We will go over to Rehab at the Hospital a couple of times everyday for the next several weeks. However, we believe Dani-Ella's best rehab is just being out of hospital and spending time with her family and friends.
Another big thankyou to Peter Wyatt who raised over $2000 for Dani-Ella. Thankyou to everyone who sponsored him.
We must thank Ian and Linda for the lovely quilt Linda made for Dani-Ella. Mum and Dad brought it to us today. Also, thanks to my sister-in-law Melissa for stocking our fridge and cupboard at RMH..as you know it was quite a surprise.
We took the kids to see Disney on Ice today which they all loved. Dani-Ella was allowed to go as long as that was all she did this weekend. She is so much more alert now and starting to speak alot better. Dani was thrilled to see Jassmine yesterday and for her to sign Dani's plaster cast. Thanks for visiting Jassmine! It was so cute - they sat on Dani's hospital bed holding hands the whole time.
I'm coming home next week just to catch up on some things.
Sharon.
Wednesday, June 15, 2005 5:19 AM CDT
I know it's been a few days..but its been so busy for us. Dani and I flew back to Brisbane yesterday on a Qantas flight. We were upgraded to Business Class. Thankyou Peter and Cathie..its not what you know but who you know. We cannot thank you guys enough for your support in Sydney. Also (Sydney) Sharon thankyou for everything too. Anyway, the flight was fantastic and Business Class is the way to go!! I hate flying but was disappointed to land so quickly.
We also want to thank everyone and Maryborough State High for your financial support..once again we are overwhelmed. Thanks to everyone involved in "Jeans for Jack" day. A big thankyou to Mr Wyatt who rode to Biggenden to raise money to Dani-Ella's treatment and everyone who sponsored him.
Dani is currently admitted at Royal Children's Hospital. She is being assessed (very thoroughly) by the rehab team and has daily PT, OT and speech therapy as well as music therapy and what ever else they can think of lined up for the next several weeks. At this stage we don't know when we will be coming home and it will be very gradual starting with weekends, then long weekends, etc. The intensive team approach available at Royal Children's seems to be the best for Dani at the moment but we will continue to review her progress over the next few weeks. Our goal at the moment is to get her out of hospital and to Disney on Ice on the weekend. I am feeling quite overwhelmed at the moment and the rehab team have scared me. But, Dani-Ella is stubborn and determined and these attributes will hold her in good stead for the hard work ahead. We never forget though that the tumour is GONE and the seizures are GONE. We can work on the rest!!
We saw Dr Teo before we left yesterday and he confirmed the tumour pathology came back as a PXA (WHO Grade II) the same as last time. This was the only thing we were still sweating on and we are relieved as it means no chemotherapy or radiotherapy will be necessary.
For all of you who are coming to Brisbane and want to catch up, just give us a call at RMH. We would love to have a coffee!!
A special hello to Kieran and his family over the other side of the world. Thankyou for your lovely card and words of wisdom. We are wearing the BT arm bands that you sent!
Keep praying,
Sharon.
Friday, June 10, 2005 5:56 AM CDT
Dani-Ella keeps improving everyday. Today she worked really hard at physio and is able to sit up unassisted and stand-up with her foot brace on. She is practising walking and is starting to get along with some help. Her leg is getting stronger and she is getting more determined to be on the go. The nurses told us she was getting cheeky.
Dr Teo came to see Dani-Ella for a while today. He had heard all the nurses say how improved she was but wanting to see for himself. She was pretending to be asleep so she didn’t have to talk to him (this is her latest tactic to avoid doing what she doesn’t want to). We took a photo of Dani-Ella with Charlie Teo today and he was cuddling her and kissing her but she was trying to get away from him. I guess he’s not her favourite person but we will always love him!
We have had confirmation from the Radiologist that the tumour is gone. However, she has a large fluid filled cyst and her brain has not moved back to where it should be. She doesn’t need any treatment at the moment but the cyst may require draining if she starts deteriorating. Please pray that this will resolve itself! Charlie will refer us to a Neurosurgeon in Brisbane (who he says is a good Pediatric NS) and is confident that he will be able to care for her. We will set up an appointment with him when we get back to Brisbane.
Dani-Ella and I will fly home on Tuesday. We are flying on a Qantas flight that arrives in Brisbane mid-afternoon. We will go straight to the hospital where she will be admitted. We have been able to book a wheelchair friendly room at Ronald McDonald House Herston and will post our contact details once we arrive. Richard is driving the car back to Brisbane. He will put us on the plane and then drive up, staying overnight somewhere and will be in Brisbane on Wednesday.
Other news: we received confirmation from Make-a-Wish that we will be going on a trip to the snow. We will defer this until next year when Dani-Ella can enjoy it more. We hope to take Dani-Ella to Disney on Ice next weekend when we are in Brisbane. It is “Princesses” and we think she would love to go if we can get some tickets (and wheelchair access…that’s something we have to start thinking about now).
Richard & Sharon.
Wednesday, June 8, 2005 6:10 AM CDT
Dani-Ella had her post op MRI scan today. We are so pleased to be able to tell you that the scan revealed a total gross resection...all the tumour is gone!! However, it did show lots of swelling and fluid so she still needs to be watched carefully.
Transfer to Brisbane has been arranged for Tuesday. It is a hospital to hospital fly transfer which means ambulance to plane, fly to Brisbane and ambulance to the Royal Childrens. We have a room at Ronald McDonald at Herston.
Dani-Ella is getting stronger everyday. Her physio has been sitting, standing and walking. She has an orthotic brace for her weak right leg but she is starting to push her leg out herself. She is very determined to be able to walk. Her goal is to be able to play cricket again. Her right arm is still very sleepy though.
We were pleased to see Ps David & Marie Cartledge today and were very happy to see Ps David go home looking so good. We have run into each other a couple of times in the last week. He and Dani-Ella met for the first time today and they have a special BT bond. We believe Ps David didn't want to go home until he had seen Dani-Ella and waited whilst she had her scan.
Richard & Sharon
Monday, June 6, 2005 9:20 PM CDT
Sorry its been so long since I updated but we're having problems accessing the internet. This might be a bit rambling as I try to remember everything I want to say.
Dani-Ella has been up and about a bit more yesterday. She was able to hop up for a shower and had a little ride in the wheelchair. She is still very weak on the right side and has been fitted with splints to keep her leg straight and to help her stand up. She has also been given a sling for her right arm to protect her shoulder.
All her drips have come out now and she is eating and drinking well. She still doesn't like solid food too much but ate weetbixs and some bread this morning for breakfast.
She has palsy of her left eye but we are patching her good eye to help strengthen the left one. She does seem to see out of her left eye.
We were so surprised this morning. She started talking!! Dani-Ella said some words to us. We thought we would have to teach her to talk all over again. She also wanted to sit up in a chair to eat her breakfast.
We will be transferred back to Brisbane at some stage. At the moment we think probably next Monday. We want to stay here for as long as possible as Dani-Ella is getting excellent care. Will post details once we know more.
Our goal is to get Dani-Ella more mobile and sitting up. The OT brought a kids wheelchair over this morning so we will be able to take her for more walks. It can take 6 weeks for the pressure in the brain to equalise. She will be dizzy and sleepy for a while yet and need losts of rest and recuperation. She is getting better everyday!!
Please continue to remember Dani-Ella in your prayers and we hope to be home soon.
Love Sharon.
Sunday, June 5, 2005 3:04 AM CDT
Just a quick update as I'm using the hospital computer. Dani-Ella has continued to slowly improve today. She has been eating lots of jelly and ice-cream today and drinking enough for them to stop the maintenance fluids. She has been awake enough to watch some videos and have some visitors.
Sharon.
Saturday, June 4, 2005 3:57 AM CDT
Hi everyone,
Dani-Ella was moved back to the paediatric ward at the Prince of Wales Private Hospital yesterday afternoon. She had all but one of her drips taken out and is now just receiving maintenance fluids until she starts eating and drinking properly.
Dr Teo is still happy with her progress and we had her sitting up in a chair today...she was asleep though. We hope to take her for a little walk in the wheelchair tomorrow. The physio has been to assess her and will come everyday. We have been given exercises to do with her. She has had some movement in her right arm last night. She is still very swollen and bruised about the face and Richard keeps asking what the other fella looks like? It's still early days yet.
She has started eating a bit of jelly and icecream today and drinking lemonade and choc milk. We are trying to get her to eat and drink as they are talking about putting a NG tube in.
There has been no seizure activity noted so Dr Teo has said we can stop the Keppra immediately but keep the Tegretol going for now. Her neurologist in Brisbane is going to have a fit.
Keep praying,
Sharon.
Thursday, June 2, 2005 6:02 PM CDT
Dani-Ella slept all day yesterday waking ocassionally for a few seconds. When we left her last night she was sleeping comfortably. She is not in pain. Because she has been so sleepy, they stopped the morphine. They had expected her to be more alert and moving by yesterday so they ordered a CT scan to check for bleeding. The CT scan came back with no bleeding but massive swelling. Dr Teo said he expected this as he removed so many viens with the tumour. He thinks it will get worse before it gets better. She is on dex for the swelling and they are watching her sodium levels. We expect her to be in ICU for 3-4 days and then on the ward for up to 2 weeks.
Dr Teo said yesterday that he is the only one that could have removed her tumour...he does the most difficult resections and he thinks this one was a difficult one! The tumour had totally invaded her left temporal lobe and half of the hypothalamus as well as the frontal lobe, 3rd ventricle, brain stem and pos fossa. He tried to preserve as many blood vessels as possible but many just tore away with the tumour.
Good news about her left eye. Dr Teo said the optic nerve is intact. She has 3rd nerve palsy but that nerve is also intact but was caked with tumour. It should only be temporary. She should be able to see. Her right side seems quite weak, particularly her right arm. However, Dr Teo said after her surgery she did move her right arm and leg and he believes the pathways are intact also.
We give all thanks and praise to our Lord for saving our daughter. We are positive about her future..Dr Teo says she is cured! Please pray for her recovery and that there are no complications as her brain swells.
Thankyou for all your messages. We will pass on the hugs and kisses to Dani-Ella.
Sharon.
Wednesday, June 1, 2005 7:13 PM CDT
Hi everyone,
Dani-Ella had her surgery yesterday. It was delayed and she went down to theatre at 12 noon. We were told to expect a 5 hour surgery. At 7pm theatre phoned us to say everything was ok but that the tumour was extensive and it was slow going. At 11pm we were told that it would be another 3 hours and to go home. At midnight, Dr Teo's assistant phone us to say they were finishing off and to come back. At 1am Dr Teo came to speak to us and at 2am we were able to see Dani-Ella in ICU.
Dr Teo told us that the tumour was stuck to everything. It was the worse PXA he had ever seen. However, he was very happy with the surgery and felt he got a good resection. He had to sacrifice alot of blood vessels so we will have to wait and see how she recovers. She lost her entire volume of blood again but the anaethetist was happy with the way he looked after her and was able to control the bleeding. When Dani woke up she was able to move all her arms and legs which Dr Teo told us surprised him. She does have problems with her left eye - the pupil is dilated and unresponsive. The tumour was surronding the optic nerve as we knew. She has not spoken to us. The tumour was in her speech area so we will have to wait and see if she can talk to us today.
Please continue to pray for Dani-Ella has she begins her recovery. Our baby girl has endured a 12 hour brain surgery. Pray for no complications as her brain swells. At 3am when we left her she was already very swollen. We are going to visit her now.
Thankyou Lord for watching over Dani-Ella. We trust in Him for healing and recovery.
Richard & Sharon
Tuesday, May 31, 2005 4:59 AM CDT
Hi everyone,
We arrived in Sydney today after a busy few days driving down. We had a ball at the Zoo and spent last night at Katoomba. It has been FREEZING!
We went to the hospital this afternoon for a MRI/MRA, blood tests, went to visit the Ped Ward and speak to various doctors. The latest news is that Dani-Ella will be admitted at 8am tomorrow morning and her surgery will be around 10am.
Richard & I will be at Ronald McDonald House from tomorrow. Will update when I can.
Thanks for all the messages, it is very encouraging to know you are all thinking of us.
Love Richard & Sharon.
Thursday, May 26, 2005 5:42 AM CDT
This will be my final update before we leave for Sydney in the morning. Dani-Ella has had a magical week at school being made a fuss of. Once again I have a long list of thankyous so please bear with me as I make a record for us. For privacy reasons I will endeavour to use first names only...you know who you are. As I said on Assembly at school this morning, we pray that God will bless you as you have blessed us!
Firstly, thanks to Jessica for the package that arrived from the US this morning. The girls love their bracelets and wore them to school today. Best wishes to you Jessica.
A BIG thankyou to Dani's Year 1 teachers Chris & Jenny, and the whole St Mary's community for a special, special week. The photo album will be treasured as will the class photo. The Think Pink day was great and we felt quite emotional seeing all the students, even the boys wearing pink to support Dani-Ella. I received a cheque for nearly $1800 today being money raised - thanks to everyone who participated. Special thanks to the Year 7 Committee who were in charge of the fundraising. I also received a cheque for $1200 from the College who ran a Pink Accessory day this week for Dani-Ella. I have heard some stories! Thankyou to the Student Council who organised this..you guys don't even know us but reached out to Dani-Ella. The banner with the hand prints is beautiful.
The Mass held yesterday was lovely and everybody has said how beautiful it was. It was nice to have our parents and my Uncle & Aunt attend, as well as many friends who have been so supportive.
I also want to spend some time thanking all the parents of Year 1. You have been so generous with both your money gifts and your time. We were presented with a care package today which contained so many things - I still don't exactly know what to do with it all. Thankyou also to the business who donated to the care package including Australia Zoo, Retravision Maryborough, The Meating Place, Seaworld, Dreamworld, Centrelink Maryborough. Thanks to Jassmine and her family for the Western Plains Zoo passes. Many of you have given us special gifts for Dani-Ella. We will never forget your compassion and kindness to our family. I feel I should make a special thankyou to those families who have kids at both Carramar Kindy and St Mary's. You guys fundraised "twice" for us and we appreciate all your help.
Hi to all the Year 1ers!!! Thankyou for giving Dani-Ella the class photo and for everyone signing it in your best writing.
Today on Assembly Dani-Ella let go of pink balloons with prayers. The Year 1ers had a pizza party which I believe was donated by Dominoes (thankyou) and watched the "Cat in the Hat" video. What a fun day!
I want to thank Deanna for all you have done..please pass on our thanks to the Bush-n-Bay Cafe. Thanks for the in-car DVD..I'm sure it will be a lifesaver. Thanks to Duncan (and his mum) for the special present you left for Jaiden. He will miss you and Nicky and his other friends at Kindy.
Thankyou to everyone who has dropped over cards with surprises inside! We appreciate your words of encouragement and prayers.
Thankyou to the staff and management of Big W who sent us a lovely package of goodies and balloons for Dani-Ella.
Until I get to a computer again..I'm off to find those chocolates that were in the care package,
Sharon.
Tuesday, May 24, 2005 1:13 AM CDT
Today was a very special day for Dani-Ella. It was "think pink" day at school and Dani was the star for the day. When we got to school there were pink balloons up on the school gates and a wonderful big banner up at the Year 1 class room. Thank you to all the teachers and staff of St Mary's, and to all the parents and students who supported us today. It was wonderful to see so much pink and it is a day that our family will never forget. Chris, we will never be able to express our gratitude sufficiently to you for all the extra work you have put into making this a magical week for Dani-Ella.
We also want to thank every family who made a donation today to wear pink to school - I believe over $1500 was donated today. Thank you also to all the families who have brought in special gifts for Dani.
I will also take this opportunity to thank Ann and the Hyne family for their generous financial gifts to us. Thanks also to Melissa for looking after the ebay auction of the motorbike. Please go on ebay and bid. I think you can search under "50cc" and it will say that the auction is for Dani-Ella.
We leave for Sydney on Friday so must go and try to get organised.
Sharon.
Thursday, May 19, 2005 3:37 AM CDT
Hi..it's been brought to my attention that I haven't updated for a week. We continue to be blessed and I will try and list everything here so we can remember God's provision.
The Carramar Kindy garage sale last Saturday was very successful, raising $2200 towards Dani-Ella's treatment. Again a very big thankyou to the Carramar community.
Thanks to Steve who has given us a brand new 50cc motorbike valued at $1100 to sell.
Thanks to Robyn and Fiona who have gone to alot of trouble on our behalf. Fiona took beautiful family portraits in the park yesterday. Robyn organised Maryborough Terry White Chemist to do professional make-up and Flair Hair to do our hair for the photos - thankyou for making this a special day for us girls. Matthew also printed off the photos and is giving us an enlargement - thankyou. These ladies have also organised:
- basket of Darryl Lee chockies - thankyou Guardian Pharmacy and Darryl Lee
- thankyou to Andy's Supermarket who are giving us $100 worth of grocery items for the drive to Sydney
- thankyou to Cyril Harris for a free tank of fuel
- thankyou to the Brolga Theatre for tickets to the Queensland Ballet
Thankyou to Helen who sent Dani-Ella a cute unicorn (which has not been out of her sight and I think Pinki has been replaced!) and some Lourdes water. Helen, there is a special Mass for Dani-Ella on Wednesday and Father Paul will bless her with the Lourdes water.
I received a card from my grandparents with the following words of encouragement:
"we get what we expect from God. So we will continue to expect good things and that is what we will receive." Please join us in expectation of good things!
Sharon.
Thursday, May 12, 2005 11:19 PM CDT
Ok thought I should update and thank people as I think of it.
Dani-Ella has been stable this week. She is really coming along with her sight words and we are happy with her reading progress.
The kids are going to stay at Aunty Cass & Uncle Nev's house at the Bay tonight with Mum & Dad. As a treat, Mum & Dad are taking them to McDonalds for breakfast. Richard & I have a 5am start at the Garage Sale tommorrow morning. Think of us when you're nice and warm in your beds! There has been heaps of stuff donated and they even managed to get sausages and bread donated for a sausage sizzle. Thanks so much everyone at Carramar especially Andrea, Shirley and the Management Committee, and thanks to everyone who has donated items to sell. Also a big thankyou to all the Carramar parents who spent time pricing and sorting items and who will be helping between 4am and 11am on the day.
We have had a very kind offer this week to have some family portraits done. A local chemist will then print and frame a photo for us. We hope we can squeeze this in before we go to Sydney in 2 weeks!
Dani-Ella's school is having a free dress day for her..there is talk at the moment that it will be a "pink day" because her favourite colour is pink. They have also organised a whole school mass for her..we appreciate all prayers for her. Thankyou Mr Ward for organising this. The Year 1ers are also putting together a "care package". Thankyou Mrs Rosin, Mrs Elmer and all the parents and children of Year 1.
Make-a-Wish (MAW) came out yesterday to interview Dani-Ella about her wish. She was very good and on cue said "I want to go on an aeroplane and I want to see snow". There was some mention made of maybe going to Tasmania. Her 2nd wish was to meet Hi-5 so we will have to wait and see what happens.
Must go..have lots of work to do.
Sharon.
Saturday, May 7, 2005 2:44 AM CDT
Hi,
We are doing well at the moment. My mum and dad arrived today for a couple of weeks. Dad is going to help me finish off the painting (love ya Dad) and Mum is going to do my housework, ironing, cooking (hint)...
I spoke to Dr Appleton on Tuesday and he said just to watch her. She had lots of seizures again on Wednesday but since then has just had a couple a day. I honestly have no idea what is going on or what triggers them. Maybe we just have to accept she'll have the occasional "bad" day no matter what we do. We will keep her meds the same for the time being. Don't want to go back on Topamax because it causes a decrease in appetite and a change in the taste of food.
We had a very exciting phone call this week - Dani-Ella qualifies for a wish from the Make-a-Wish Foundation. We don't know when this will happen but unless Dani changes her mind we are all off to the snow.
We have received a number of lovely cards, letters and phonecalls this week which have been very encouraging - we thankyou so much. As Richard has said to many of you we are humbled (and quite embarrassed) at the support being given to us. Special thanks to Kezz from Canberra (Oz Brain) for your phone call. You have put alot of our worries to rest and as you say Dr V will get over it!
Love to everyone,
Sharon.
PS Happy Mother's Day!
Wednesday, May 4, 2005 5:23 AM CDT
There was great excitement tonight in the Jack household with Dani-Ella losing her first tooth. We are expecting a visit from the tooth fairy tonight!
Dani-Ella is quite the little celebrity at school with being in the paper. We were very happy with the article and lots of people have said it was a lovely photograph and story. Kindy have been inundated with phone calls and donations so it achieved the desired outcome.
On a more worrying note, her seizures have been really bad over the last couple of days. She's been having about a dozen a day again after going down to only 1 or 2 a day. I had to pick her up from school yesterday after she had a quite severe one that left her disorientated and tired. I will have to ring her Neurologist tommorrow and see what to do. She had the best seizure control when she was on the 3 medications. We may have to add back the one we just weaned her off.
Sharon.
Monday, May 2, 2005 7:44 PM CDT
Hi Everyone
Dani-Ella was the front page article in today's "Fraser Coast Cronicle" - Tuesday 3rd May.
Rare tumour makes every day precious by Tess Patterson
Five year old Maryborough schoolgirl Dani-Ella Jack is facing life-threatening surgery to remove a rare brain tumour.
Her parents Sharon and Richard have decided to go ahead with the surgery despite a previous unsuccessful attempt last August.
Dani-Ella was diagnosed with a low grade brain tumour in July last year after she started having convulsions.
During surgery in Brisbane in August her carotid artery burst and her parents were told by doctors that there was a risk that Dani-Ella could have suffered a stroke or brain damage.
"When she came out of the anaesthetic she was perfectly normal," said Sharon. "We were so relieved."
Despite being on anti-convulsant medication, Dani-Ella still has seizures everday.
Sharon and Richard have decided on further surgery sooner rather than later because Dani-Ella's brain is better equipped to recover from surgery while she is young.
If the operation is not performed now, the tumour will continue to grow and will eventually have to be removed.
Neurosurgeon Charles Teo from Sydney will perform the operation.
Although Sharon believed Dani-Ella was given the best of care during her first operation, she urged other parents in similar situations to consider their options before rushing into surgery.
"You've always got to get a second, third and fourth opinion," she said.
Dani-Ella's parents have been told by Dr Teo that the risks of surgery are high - Dani-Ella's tumour is large and deep within the brain.
"We need to give her a chance. The longer the tumour is there, the more pressure there is on her brain and the more likelihood of brain damage. The worst part has been the difficulty is finding resources for parents. Unlike overseas there are no paediatric brain tumour centres here."
With another two children to care for, Richard and Sharon are grateful to family who keep the household functioning when Dani-Ella needs to go to spend time in hospital.
Sharon said her daughter coped well with medical procedures with the help of her pink teddy bear. "Pinki goes in the MRI scanner with her. She has lots of blood tests and she just puts her arm out."
Dani-Ella's operation is schedulted for June. Meanwhile Sharon and Richard are trying to keep life to a routine.
"We just try to make every day count. With any child you don't know how long you're going to have them. We are trying to create memories".
Garage sale to help
The Carramar Community Preschool and Kindergarten will be donating the proceeds from their monster garage sale on Saturday, May 14 to help pay for Dani-Ella's treatment costs which are expected to reach $20000. If people would like to donate unwanted goods they can ring 41212115 or drop them off at 326 Alice Street, Maryborough.
(www.frasercoastchronicle.com.au)
Saturday, April 30, 2005 11:30 PM CDT
Just felt to post this song that Richard sang at Church this morning.
Wounded for Me
1. The Son of God,
Hanging on a tree,
Why does it happen?
For you and for me.
The blood flows down,
The angels weep,
His heart is breaking.
How can it be?
Chorus: Wounded for me, bruised for my peace,
Surely He's carried our grief.
Poured out for us,
Broken for love,
All of our sin laid on Him.
2. His eyes grow dim,
The sun won't shine,
All heaven is silent,
The Saviour dies.
The mountains shake,
The veil in torn
The way is open,
It cost His all.
3. Two thousand years
Have come and gone,
So many voices,
Still only one.
One door to life,
One way to love,
One road to the Father,
Paved by his bood.
(2000 Garry McDonald, Queensland, Australia)
Saturday, April 30, 2005 2:07 AM CDT
Hi everyone,
What a wonderful day...we have had a lovely family day at home.
It wasn't so wonderful last night after we had confirmation of Dani-Ella's surgery - we are pencilled in for 1 June. It sort of hit us now that it is actually happening and we are both scared but trusting in God for a miraculous outcome. So, after a quiet day at home together and listening to lots of Hillsongs whilst painting we feel calm again.
I have spoken to a journalist during the week and the local paper are doing a front page story on Dani-Ella next week. The main purpose of us seeking this publicity is to ensure the Monster Garage Sale at kindy on 14 May is a success. I have also spoken to the Principal of the girl's school (after he found out about the garage sale - some of his kids go to the same kindy) and they want to help out with some kind of fundraising also and a special Mass for Dani and whatever else we want them to do. The Year 7s will take on this project as part of their leadership work this year.
Sharon.
Wednesday, April 27, 2005 9:07 PM CDT
Hi everyone,
Just a quick update today. Dani-Ella continues to be well and she is still only having a couple of seizures a day - mainly early morning and around tea time. Most of these she says are just a "funny feeling" sometimes called an "aura" and pass quickly. We have now weaned her off Topamax completely in favour of Keppra. Keppra is only available in tablet form and we have been amazed to see Dani-Ella swallow these tablets (she is 5 years old). We nearly died last night when she swallowed it without water! She just put it in her mouth and swallowed it! We are glad we switched to Keppra as she is getting alot better seizure control now and we have not noticed any of the worrying side effects we had to watch for.
Carramar Kindy are having a "Monster Garage Sale" on Saturday 14 May with all proceeds going to Dani-Ella's treatment costs. Thanks to everyone for their support of this event. I told Richard he will be the one getting up at 4am.
We are still waiting to hear from Dr Charlie Teo about a firm date for her surgery but still are hoping for June.
We are applying for a wish for Dani-Ella from the "Make-a-Wish Foundation. Her wish is to go on an aeroplane and to see snow. I asked her if she really wants to go on an aeroplane because I hate flying! Will wait and see if she qualifies for a wish.
Sharon.
Saturday, April 23, 2005 8:15 AM CDT
We got home late this afternoon from Surfers. We had a game of tennis and a swim this morning before leaving. Emmelyne has started tennis coaching and has a great "forehand drive" (as we were informed). Dani-Ella is a cricket player and tried to play tennis like she plays cricket...wasn't very successful. We also stopped in for a suprise visit with my grandparents in Brisbane. They continue to worry about Dani-Ella and we try to see them and keep them up to date with what is happening.
A quote came to mind this week after a totally amazing couple of days.."there are no coincidences only divine interventions":
1. I have been trying to find out what rehab facilities are available in Maryborough in case Dani needs rehab after surgery. I phoned a mum from school who I knew from kindy who works in SEU. She gave me a list of contacts including the name of a lady at Hervey Bay who's daughter had a hemispherectomy (sp?) in Sydney at the same hospital we are going to by our NS in Brisbane and she had the same Neurologist we have. This is a procedure where half the brain is surgically removed because it has been damaged by seizures. I could not believe it and I was able to talk to her on the phone about many things that had been worrying me about going to Sydney.
2. I was told that I may have trouble accessing PT for Dani-Ella locally. I know a physio in town who use to work at the Child Health Clinic...an old family friend from Gladstone. We visited them once when we first moved here about 2 years ago and saw them at Church last Christmas. Well, guess who rang me this week and said she wanted to stop in for a cup of tea!!!!
3. When we went to Sydney to consult Dr Teo, our local hospital refused to reimburse us for travel/accom costs. There is a Patient Travel Scheme in Qld which helps with the costs of travel/accom if you need to travel for medical treatment. The guidelines are very stringent and you need to get forms signed by the hospital/GP/specialist in order to make a claim. I wrote to the Director of Medical Services at Maryborough Hospital asking for a review of the decision to refuse our claim (I have found it very frustrating at a regional level to get medical staff to understand Dani's condition - Epilepsy caused by a brain tumour, as it is not something they see every day). I just received a letter stating that the Director has authorised payments including reimbursement of airfaires for the consultation and for accommodation in Sydney for surgery.
4. Jaiden is attending a C&K kindy - the same kindy Dani-Ella attended and I was Treasurer for about 1 1/2 years. There was a Kindy Committee meeting on Monday night and the Director has told me that the Committee had decided that they would waive Jaiden's kindy fees for the 2 weeks we expected him to miss whilst in Sydney. They also offerred to an extended payment plan if needed. They also want to do fundraising for Dani-Ella to help with going to Sydney. All I can say is that I was overwhelmed.
5. Another mum at kindy told me that she had a BT too. What are the odds in Maryborough that 2 families attending the same kindy of 40 children would be dealing with brain tumours?
All I can say is thankyou God for bringing us to Maryborough and giving us such a wonderful community to support us. Dani-Ella has touched many people and we don't know why this is happening to us but cling to our belief that He is in control.
Sharon.
Sunday, April 17, 2005 9:03 PM CDT
We've had a fun weekend with the St Mary's school family fun day on Saturday. All the kids did their class performances and then it was unlimited rides for the rest of the afternoon. The girls ran off with their friends and Richard got to take Jaiden on all the rides (I don't know who had the most fun!). Dani-Ella was had it on Sunday though. She was not herself - very tired and "out of it". She had a big sleep in the afternoon and then slept for nearly 12 hours that night. But she woke up this morning back to normal. She has now been on a new anti-convulsant medication (Keppra) for 1 1/2 weeks and we have noticed a reduction in the number of seizures she is having and they are not as severe. The side effects have been ok - we have only really noticed she's a bit crankier and can be uncooperative. But we hope this settles down once her body becomes more accustomed to the meds.
We are going to the Gold Coast on Wednesday for 3 nights. Richard has a work conference at the ANA Hotel and we have decided to stay at the Mercure Resort at Surfers Paradise. This resort has a fun park for the kids and also a free kids club. It should be heaps of fun for the kids.
Saturday, April 16, 2005 6:11 AM CDT
Thought it was about time I wrote about our trip to Sydney on 4/5 April to see Dr Charlie Teo. Firstly I have to say we are very thankful to Cathie from the PBT list for picking us up from the airport and inviting us to stay at her home. Cathie also organised for another mum whose daughter has had treatment for a BT to pick us up, take us for coffee and then take us to Dr Teo's rooms for our appointment. Thankyou so much Cathie and Sharon! It was wonderful to meet other parents who are going through a similar ordeal and who had Dr Teo perform surgeries on their children.
I don't know how to put into words our meeting with Dr Teo...he was just fantastic. He shared M&Ms with Dani-Ella and showed us pictures of his family. Alot of what he said just fell into line with what we think and feel about Dani-Ella's treatment:
1. Our main concern is that eventhough this is a benign tumour it will continue to grow and at some point will need to be surgically removed. As it grows it will cause more pressure damaging other areas of her brain. We feel that Dani's chance of recovery from any neurological deficits would be better the younger she is due to plasticity of the brain, ie. the brain can make new pathways if the old ones are disrupted.
2. We also believe her seizures will remain uncontrolled as there is an underlying cause...a brain tumour. If the tumour is removed, there is a greater chance that the seizures will cease or reduce (90 hance) and also a greater chance of gaining control with anti-convulsants. "Tumours associated with epilepsy should be removed as early as possible as there is a high rate of seizure freedom".
3. Surgical removal of this type of tumour is generally a cure. The rates of PXA recurrence are quite low. PXAs are a "good" tumour to have. Two-thirds occur under the age of 18 and usually appear in the temporal lobes. They represent less than 1 f all astrocytomas. Dr Teo does about 500 BTs a year and less than 3 per year would be PXAs.
Dr Teo was also very careful to warn us of the risks of surgery. There is a high risk of death, stroke causing paralysis on her right side (she is right handed), blindness and memory problems (he is removing part of her temporal lobe to gain better access to the tumour). The tumour also involves the hypothalamus which regulates body processes such as thirst, hunger, body temp and hormones. He said the blood vessel problem scares him but does not deter him from doing the surgery. We were hoping he could do endoscopic neurosurgery but because she has already had a craniotomy and he expects the tumour to be very bloody he will do another craniotomy and use endoscopic techniques to remove the tumour.
Our decision - go ahead with another craniotomy some time in June. When we left his office we felt calm and confident. We both felt such a peace that this decision is the right path for our family to take..the path of least regrets.
Thursday, April 7, 2005 6:55 PM CDT
Well we have just completed our whirlwind hospital trip and have been able to make some decisions we feel confident and at peace with.
Firstly, we saw another Neurologist for a second opinion regarding Dani-Ella's seizure medication. His treatment suggestions were very similar to what we are doing now so we have peace of mind. We have been hesitant to start a new medication that Dr Appleton wanted us to give to Dani-Ella as its side effects are emotional and behavioural. However, we now feel we must start her on Keppra to try and keep her comfortable and reduce her seizures as much as possible. If we notice any side effects in the first 2 weeks we can get her off it quite quickly and try a different combination.
Secondly, she had her 4 monthly MRI scan. She was so good and kept very still. She also was very cooperative in having the contrast injected into her vein in her arm. We are pleased to report that the MRI showed NO SUBSTANTIAL GROWTH in her tumour. To God we give all the Glory. However, we were shocked when told her tumour measures 5cm x 4.5cm x 3.6cm.
Thirdly, we had an outpatients clinic with the NS who did her surgery. Once again we were disappointed with her manner and explanation. She was 1/2 hour late for the appointment and was in a rush as she was suppose to be in surgery. We were told the same things that we have been told in the last 8 months. The tumour is large and in a difficult location. It involves many very important blood vessels including the carotid artery which if damaged in surgery could cause a stroke resulting in right sided paralysis. It is best to monitor the tumour growth as there are cases where these tumours have not changed for 10 years. In any event, our NS told us that the Royal Childrens Hospital in Brisbane does not have the equipment needed for her to operate again at this time...well thanks it would have been nice to know this before you operated last time!
Will continue with our trip to Sydney later,
Sharon.
Thursday, March 24, 2005 6:11 AM CST
Happy Easter! We started Easter holidays today in Queensland. We will be spending Easter painting our house. But we have a trip to the Sunshine Coast to look forward to next week.
Dani-Ella's appetite is improving. She had 2 breakfast sittings this morning - once for weetbixs and then again for ham on toast. We have been extremely concerned about Dani-Ella's weight since she got down to 17.5kgs (and back to a size 4 which was hanging on her) a couple of months ago. It was a combination of vomitting after seizures and a new medication (Topamax) which can cause a decrease in appetite. We have been taking her to see a Naturopath and she now takes a protein powder and a vitamin powder. At the Naturopath's suggestion we have also changed out diet to a high protein, high fat, lower carb diet. We still have some bread and the occasional cake but not so much sugar and preservatives! We make our own juice and eat lots of fresh fruit and veges.
Dani-Ella has an appointment for a 2nd opinion with a Neurologist based at the Brisbane Mater Hospital next Wednesday. We hope he will also present her case to their surgical team. We want to further explore medication options to try and gain a bit more control over her seizures. She also has a MRI Scan at the Royal Children's Hospital next Wednesday afternoon. Please PRAY FOR US at this anxious time - we are expecting good news! We will then meet with her Neurosurgeon on Friday morning also at the Royal Children's Hospital to discuss the results of the scan and any treatment. We are excited to be taking Dani-Ella to Sydney for an appointment with Dr Charlie Teo, a renowned Neurosurgeon who has had experience with many pediatric brain tumour cases. We are flying to Sydney for 24 hours and staying with a family I have "met" on the Pediatric Brain Tumour internet support group, their daughter was operated on by Dr Teo.
Anyway, back to our story...we were allowed to leave hospital on Saturday 7 August as long as we stayed at Ronald McDonald House. We needed to stay in Brisbane until the histology of the tumour was finalised. We had an appointment with Oncology on Tuesday 10 August. I will never forget going to the Oncology Ward and Oncology Outpatients - it was sooo scary. We received "good" news that the tumour was low grade, generally considered benign and not aggressive. On this basis, no chemotherapy or radiation therapy would be offerred. We left Brisbane late Tuesday night and drove the 3hrs home. It was very important that we got home that night because it was Dani-Ella's 5th birthday the next day - 11th August.
Dani-Ella had a wonderful birthday party at preschool. We took a cake along to share and she received gifts and cards and alot of parents turned up also. We received wonderful support from the preschool community over those difficult few weeks and we know that Dani-Ella's illness touched many people. With relief that our daughter had survived her ordeal relatively unscathed we enjoyed getting back to being a normal family again.
Dani-Ella's MRI scans since her surgery have remained stable with "no substantial growth". However, we were devestated when on 13th September she had a seizure just before going to bed. Her seizures continued to grow more frequent over a couple of months until Boxing Day 2004 when she started having them every 15 mins. After being admitted to Hervey Bay Hospital and Maryborough Hospital with no change in her condition, we travelled back to Brisbane to the Royal Children's Hospital where she was admitted. The seizures continued for many days and a couple of different medications were trialled. She had an EEG on 4th January which our Neurologist was happy with and we were allowed to go home. She was still having many many seizures a day but was at least able to function.
We decided to enroll our girls at St Mary's Catholic Primary School this year. Emmelyne is in Year 4 and Dani-Ella started Year 1. Many of Dani-Ella's friends from both Kindy and Preschool were attending this school and we thought it best for her to be in a very caring and supportive environment. They also have smaller classes - there are only 20 kids per class. She is able to attend school normally and her teacher and fellow students have been very understanding of her seizures. She has a couple of "boyfriends" who look after her which is really nice. She also has a Year 5 buddy who just loves her and comes to the junior playground to look after her before school. The teacher told me of an incident where Dani had a seizure when they were walking in line and all the little Year 1's just yelled out "she's having a black". The little boy she was holding hands with just stood with her until the seizure finished.
Next update soon,
Sharon.
Thursday, March 17, 2005 0:30 AM CST
Dani-Ella's seizures are finally improving. She is only having 3 or 4 a day and for the last 2 days has not had any at school. We have increased her Tegretol to 360mg per day and reduced the Topamax to 15mg per day. Since weaning her off the Topamax we feel she has improved mentally and is starting to put on some weight - she is now around 18kgs. Side effects of the Topamax include slower processing and decreased appetite. We will continue to demand blood tests to check her levels and increase the Tegretol until she is theraputic.
Now, a run down of our brain tumour journey to date:
Dani had her first seizure almost a year ago - Easter Saturday. She fell to the ground and appeared dazed. She then slept for a couple of hours. After she had a couple more strange episodes, we took her to our GP on 28 May. He referred us to a Neurologist in Brisbane and on 5 July she saw Dr Appleton and had her first EEG. The EEG showed some "focal higher voltage slow activity in the left posterior region". He found no deficits during his neurological examination and diagnosed simple partial seizures. He suggested that she have an MRI scan to see if there were any underlying reasons for the seizures - but don't worry he didn't anticipate finding anything.
Our world changed forever on 22 July when Dani-Ella had her MRI scan and Dr Appleton rang me at Ronald McDonald House to come straight in to talk to him before we caught the Tilt Train back to Maryborough. The MRI scan revealed a mass in the left hemisphere of Dani-Ella's brain. The good news was that the radiologist thought it was most likely a low grade tumour.
Dr Appleton immediately took our case to the Neurosurgeon at Royal Children's Hospital in Brisbane, a Dr Mariann Vonau, for review. We received a phone call at around 7pm on the 28 July from the Medical Imaging Dept at the RCH to tell us we needed to have Dani-Ella at the Mater Private in Brisbane by 8.30am the next morning for another MRI brain and spine so she would be ready for surgery on 3 August.
We drove to Brisbane on 1 August and checked into Ronald McDonald House at Herston - what a wonderful facility within 5mins walk of the Hospital. Dani was admitted to McConnell Ward on 2 August and underwent a hearing test and an eye examination by the opthamologist. Both came back normal. At 8.30am on 3 August, we took her down to theatre. Her surgery lasted about 6 hours. Richard stayed at the Hospital praying and fasting whilst I went back and forth doing anything to keep myself occupied.
We were waiting in the Parents room when Dr Vonau and a junior doctor came in to talk to us. Dr Vonau told us that the operation had not gone as planned and that whilst peeling away the tumour the left carotid artery had burst. She had a massive haemorraghe and had needed alot of blood. The junior doctor later told us that her blood pressure was almost nothing for 3 minutes and it had gotten pretty scary. Dr Vonau said that the blood vessel looked abnormal. They called in another Neurosurgeon, a Dr David Walker, to help clamp off the artery. Dr Vonau told us that they didn't know what Dani-Ella would be like when she woke up. She could have had a stroke or be brain damaged and if the blood didn't flow through the right side of the brain to the left side she would be in a really bad way. We ran down to the PICU and had to wait whilst they settled Dani in. We were with her when she started to wake up and the first thing she did was click her fingers and we knew she was OK.
The next day when we arrived a the PICU she was asleep and the doctor told us she was up a 5am eating jelly and entertaining everyone! The doctor said "she's not only cute, she's also clever".
We want to thank everyone who helped us through this stressful time. For everyone who visited us, brought us meals, prayed for us, gave Dani gifts, and for everyone who helped out my Mum and Dad who came to stay with our other kids...we have no words to express the depth of our gratitude to you.
Will continue another time.
Sharon.
Wednesday, March 16, 2005 1:49 AM CST
This page has just been created. Please check back for additional updates.
Click here to go back to the main page.
----End of History----
| Donate | How To Help | Partnerships | Contact Us | Help | Terms of Use | Privacy Policy | |
|
Copyright © 1997 - 2004 CaringBridge, a nonprofit organization, All rights reserved. |