DAY 8 - A good end to the week!

November 23, 2012

I left hospital today feeling relieved and somewhat satisfied; this was the first time since Charlotte had started radiation. I am not sure whether it is because it is Friday and Charlotte has two days off from this process or simply because today Charlotte’s treatment and recovery was well-managed and she recovered well. After another good chat with the anaesthetic doctor today we had doses of medications covered, a contingency plan for recovery and meds ready for sedation to help Charlotte out of the delirium. The doctor agreed that it was important to address the frontal lobe disturbance, which is the main issue, in order to overcome the emergence delirium. Following almost half an hour of aggressive behaviour the delirium began to escalate. So, the nurses organised the charted sedation and it took two doses to turn her around. The type of sedation chosen not only stopped the ballistic behaviour but revealed a good recovery with little behavioural angst or edginess. We now need to look at which plan of attack and what medications will be best for Charlotte for the next four weeks.

So, Rod and I will need to consider the best plan for Charlotte who needs to be safe, calm and as well as possible for the remainder of the treatment. I am hoping for a repeat of today or better. I felt like I had not let her down today and the staff worked hard to assist. Thank goodness for the perseverance of some of the recovery nurses, Charlotte’s clinical nurse consultant and the outstanding anaesthetic doctors.

 

Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work: you don't give up. Anne Lammott

Love,

Rod and Beck xo

 

 

Radiation and anaesthetic overload! – Wednesday 21 November, 2012

November 21, 2012

After the last few days it has become apparent that Charlotte was not going to come out of anaesthetic in any appropriate or comfortable manner. Each day she has continued to suffer from emergence delirium and it has got a little worse and longer each day. She is so violent and dangerous to me and herself that Monday was the final straw. Left somewhat to my own devices and left to tackle the episode on the ward I really did feel broken. I was devastated at the state she is in and exhausted with dealing with it on my own. I was so upset and angry when I got home that I drafted a long letter identifying the concerns that Rod and I had with Charlotte’s condition and requested a medical and clinical plan moving forward, in order for us to survive radiation every day until Christmas. She has a shunt, not long had a craniotomy and a central line hanging from her chest and here she is thrashing around violently for long periods of time.

Charlotte’s clinical nurse consultant and the anaesthetic doctors have come together to observe Charlotte, work on the levels of anaesthesia and doses administered and to devise a more appropriate plan for her recovery. She has no recollection of the episode but is physically exhausted on top of having radiation too. Rod has been in for two days to give me some respite and he has found the whole event exhausting and upsetting. I don’t think he could understand how I had dealt with it as Charlie is so strong and angry when she is going through the delirium, even he struggles The anaesthetic doctors remained to observe her waking and agreed that she not only has emergence delirium but frontal lobe disturbance which also makes it difficult for Charlotte to moderate her moods and behaviour emerging from anaesthetic. A double whammy! Charlotte doesn’t do things by half measures!!!

Each day the doctors are working on ways of tweaking the infusion of drugs, the medication and recovery process. Ultimately, Charlotte is doing so badly that she has to be sedated to get her through the delirium. Today, not even that worked and a double dose of sedation had to be administered. I am still trying to get my head around the predicament that we find ourselves in with Charlotte. The poor kid has already dealt with so much and now this too. It will be a very long road to Christmas Eve.

Love,

Beck and Rod xo

 

Day 2 and 3: Ground Hog Day - 18 November, 2012

November 18, 2012

Charlotte had a better day on Wednesday and the recovery nurses did everything in their power to bring Charlotte out of anaesthetic slowly and calmly. She was tired and a little nauseated during the afternoon but declared; “It’s been a day Mum, let’s turn on some Katty Perry!”. So there she was dancing around the living room to Last Friday Night and California Gurls featuring Snoop Dogg!! She went to bed early and we woke during the night to her screams as she sat legs akimbo vomiting until there was nothing left (needless to say, I won’t be cooking burritos for a while). She was really off and exhausted. It was nearly two before we got back to bed and Charlotte went down complaining of a shocking headache. I felt so sorry for her as I patted her back and she fell off to sleep. I woke at 6am to Charlie’s little face staring at me asking if I was ready to get up and go again! I wasn’t sure who had been sick most of the night because I felt like it had been me!

Thursday went to plan and she did well at hospital and well at home. She was a little tired and had a dull headache but was okay. We enjoyed Friday because there was no hospital as it was maintenance day for the radiation machine. When Rod told her that there was no hospital she responded by screaming; “woohoo!”.Charlie was visited by her ballet teachers who had baby chinos and morning tea with her and a visit from her cousin Tilly too! By lunch time Charlie was crashing and slept on the floor in a make-believe camp out. She was exhausted! It was a good way to end her working week.

Love,

Beck and Rod xo

 

 

Day One of Radiation - 13 November, 2012

November 13, 2012

I woke this morning to Charlotte’s little voice calling; “Mum, look!” and as I looked down at her she had rolled up her top and was showing me her, supposedly sterile, bandage peeled away from her central line. I gasped and jumped out of bed to search for a sterile, sticky bandage to reseal the wound until we arrived at hospital. The drive in went well – little traffic and only one meltdown from Charlotte about her starving state! Once we arrived the nurse on C2 North was excellent with Charlotte and agreed to send the dressings down to operation/ recovery for them to do the redressing under anaesthetic to avoid upsetting Charlotte.

We then walked over to Prince of Wales for radiotherapy. We arrived to a warm reception by the staff in the adult hospital. The nurses had made a huge poster with Charlotte’s name on it and all the days marked out for Charlotte to put a sticker on as we complete each round of radiotherapy. It was just gorgeous! I was feeling really good about everything – Charlotte was doing well and everyone had been very helpful. The nurse then said that Charlotte’s radiologist wanted to speak with me before we commenced and I knew something was up! I then had another discussion with Charlotte’s radiologist who advised me that they could not administer radiation solely from the right frontal lobe as hoped. They would have to come from both sides in order to minimise impact to the hypothalamus. Functions of the hypothalamus include the:

  • release of 8 major hormones by the pituitary gland
  • controls body temperature
  • control of food and water intake, hunger and thirst
  • control of sexual behaviour and reproduction
  • control of daily cycles in physiological state and behaviour also known as circadian rhythm
  • mediation of emotional responses

It is quite reasonable to suspect that Charlotte’s hypothalamus has already been damaged in some respect due to the immense pressure that it was under before the tumour was originally removed in 2009. Similarly, it is also understandable why her circadian rhythms were so disturbed and we had so much trouble with her sleep for so long. So, to have further damage would be devastating. However, Charlotte will lose hair across the front of her head and for her this is a big deal. She loves her hair now that it has finally grown back…so beautifully! I felt somewhat ambushed by this late discussion before I signed away yet another massive medical procedure. We finally went in to radiation and Charlotte sat on my lap asking the doctors and nurses a trillion questions about everything in the room that was new or interesting to her. Meanwhile, they had put her to sleep via her central line and she was none the wiser. No mask, no pre-med and no screaming! Woohoo!!!

I grabbed a coffee and buried myself in Barbara Arrowsmith’s, The Woman Who Changed her Brain. I had been fortunate enough to hear her speak on Monday morning after reading about her work back in 2009 when my beautiful friend, Chris, bought me Norman Doidge’s, The Brain that Changes Itself. When I read about her work in Norman Doidge’s stories of neuroplasticity I talked about finding out how her work with neuroplasticity and cognitive training may one day benefit Charlotte. So, yesterday was a profound moment for me. Being an educator and having a child with a brain tumour (and virtually no frontal lobe), it was impossible not to feel truly elated by the possibilities and wanting to cry at the same time! The words and information of one woman's life resonated so intensely.

I often describe to Rod that parenting Charlotte is like hitting my head against a brick wall. While my friends respond with comments like; “that’s a four-year-old for you” and “there all the same”. I know that it is not just her personality or just developmental but much more. Ironically, as I sat and read the chapter “Hitting the Wall”, I finally put together the pieces that I have been looking for. As I have long been suggesting the large removal of a frontal lobe may have no quick-look, psychometric tested answers, or obvious visible deficits. However, the damage to the frontal lobe and removal of most of it is critical to her impulsivity, Charlotte’s ability to disregard her actions, her lack of attention and distractibility and other issues with her working memory. These deficits are what I live with and what she will come to find more and more frustrating as she is expected to function at school and beyond.

After listening to Barbara speak yesterday, reading most of her book and other texts like The Brain School by Eaton; it is a relief that the brain is not considered “hard wired” like a computer but more like a muscle that can be exercised. What makes the Arrowsmith Program truly amazing is not just that it is steeped in neuroscientific research or that it really works for people with learning difficulties but that it was pioneered by a lady who herself suffered from learning disabilities and advocates that her “daily prayer is that this work, grounded in compassion, its integrity uncompromised, goes into the world with ease and grace” (Arrowsmith 2012, p.216).

As I was drawn in by each page and its possibilities for Charlotte I realised that she had been in theatre way too long. When they finally called me they had taken much longer to fit and adjust the mask to make certain that the radiation was given accurately. Once in recovery things just went downhill. Charlotte took a long time to wake and when she did was out of control and was agitated, angry, screaming and hitting me with uncontrollable rage. This continued for nearly an hour and a half before an anaesthetic doctor was called. It was a busy morning in recovery and I was left somewhat on my own to weather this unusual and distressing behavior. The anaesthetic doctor spent some time investigating Charlotte’s anaesthetic doses and talking about the morning with me. She explained Charlotte’s reaction as a clinical condition called emergence delirium. This condition can be experienced by any patient coming out of anaesthetic but is common in children between 4 and 6 ½ years old of age. As you can imagine 6 weeks of this would be enough to wear us both down completely. I was exhausted and Charlotte can’t remember a thing. So, everyone is on alert for how things are going to pan-out tomorrow. Today was an overload for both of us. I am hoping for a smoother run for Charlie tomorrow.

Love,

Beck and Rod xo

 

 

 

 

 

A change of plans – 9 November, 2012

November 9, 2012

By the time I had finished work on Wednesday evening the plans for Charlotte’s surgery and planning for radiation had changed numerous times. It was finally arranged that we had to be at the hospital on Thursday morning by 8.30 to collect bloods forms, have bloods taken and be ready for admission to Ambi Care by 9.30 am. Charlotte then had to go to Prince of Wales for a vascular scan to ascertain which side her central line would be inserted. Previously, Charlotte had been given chemo through a portacath which had become compromised and the second port was punctured. By the time she had gone through her four operations for the insertion and then removal of the ports; one of the arteries had become compromised. So, her third port was inserted on the right side. Therefore, it was decided that her right side was the best option for the new central line. The surgeons, as you can imagine, needed to get this right.

Starving and getting tired Charlotte was ropeable by 2pm, when she finally got to surgery. She hates the anaesthetic mask and was screaming until she held the mask on herself while I held her on my lap to calm her down. I felt so sorry for her. She was exhausted and simply hates the whole anaesthetic mask situation. Also starving, I ran to the café to eat. Those of you who know me well know that I cannot go for more than two hours without food of some description!!! Charlie came out of surgery a little grumpy and very sore. She was bruised, tender, tired and ravenous. Once on the ward Charlotte proceeded to eat toast, most of her dinner tray, a little sushi, and fish and chips. A great effort! She certainly made up for missing breakfast and lunch. I didn’t have the heart to tell her that she would have to starve herself again for her radiation planning in the morning.

It was a busy and noisy night on the ward with six kids and six parents in our bay. All things considered, Charlotte slept really well and settled immediately after each of her obs. I woke this morning to her little hands tapping me on my head asking what I was doing. I had finally fallen asleep huddled in a ball on the chair next to her bed. I peeled open my eyes and replied; “trying to sleep”. Looking a bit bemused by my body curled-up strangely in the chair and my head on her bed she just wanted to know when the breakfast trolley was arriving. Things went downhill from there!!! She had to fast again for her mask planning for radiation, which is done under general anaesthetic.

When she went into theatre at 10 am she was somewhat relieved that she didn’t need the mask this time and the doctor used her new line to administer the anaesthetic as she sat on my lap. Easy - in Charlotte’s standards. The line worked well, her other cannula was removed and her mask planning was completed! After final obs, recovery and some time on the ward, we arrived home late this afternoon. Both of us were relieved for various but different reasons. Charlotte now has to have some quiet time at home (I smiled when this was suggested to Charlotte – oxymoronic!) before radiation commences on Tuesday morning. Charlie went to bed a little quiet and tenuous about sleeping on her central line. When Madeleine saw the bruising and blood oozing from under her dressing she became very quiet and went to bed swiftly!

Love,

Beck and Rod xo

PS I have just hit 26 000 words about Charlotte’s journey. Thanks for still reading and checking the blog.

 

 

 

 

 

 

 

 

 

 

Radiotherapy meeting SCH – Monday 5 November

November 5, 2012

Rod and I had our meeting with the radiologist, Dr Smee this morning. The meeting went really well and Dr Smee was extremely empathetic about the duration of our journey with Charlie and the obvious concerns about treatment that we may have. He left Rod and I feeling quite reassured and happy to move forward with this treatment. He was extremely accommodating with the timing and commencement of treatment, willing to push this through to get us home and finished by Christmas (if all goes well). So, Charlotte begins on Thursday with a general anaesthetic to have a mask of sorts fitted and marked to position her head for focal radiation. Due to the position of her brain they should be able to have the beams focused away from any part of her brain that could be damaged and that may cause repercussions for Charlie cognitively. Having said that there is always spray from the radiation and still minimal chances of complications for Charlotte.

She will then need an operation to have a central venous line fitted for the duration of her treatment. She needs this central line for the administration of general anaesthetic, each day, for roughly six weeks. Hopefully, all going well, radiation will commence on Monday or Tuesday. As you can imagine Charlotte required some coercing and a simple but clear explanation about what was going to happen to her. She looks great and seems happy enough with our explanation of treatment. I am sure after a few weeks of treatment every day she will be a little over the whole thing again.

As I walked out of the hospital I burst into tears. Somewhat in relief to be moving forward, partly because this poor kid has another massive journey ahead and in part because Dr Smee was so fabulous with Rod and I and we were able to have a thorough and respectful discussion about Charlotte and the best way forward for her! I guess all-in-all I felt a sense of relief and trepidation all at the same time. I have never been one to want for things and need more than I have but my sadness always lies in the fact that you always want the best for your children. Despite the fact that I understand that it is not my fault Charlotte has a rather rare and malignant tumour; I just want a little more for a little girl who is bright, amazingly vibrant, beautiful, excruciatingly hard work and refreshingly delightful!!!!

So, here we go again another stint in hospital to fight this tumour!

Love,

Beck and Rod xo

PS Rod had his hair shaved, the fundraiser raised $20 000 for the hospital and Rod’s scalp is currently sunburnt!!!!!

 

Charlotte’s Treatment - Thursday, 25 October, 2012

October 25, 2012

After much anticipation we finally met with Charlotte’s oncologist Dr David Ziegler this afternoon. We were pleased to know that chemo would not an option for Charlotte’s treatment and no one could be more happy then Charlotte herself. We had a fairly reassuring discussion about the tumour and radiation to follow. Histology revealed that Charlotte only has one area of tumour growth, it is still anaplastic ependymoma (III) and it appeared fairly contained within a membrane when removed. David believes that there is a reasonable to chance to conquer this tumour as radiation should have been the first line of defence following the first two surgeries. However, she was too young and the tumour was too large to irradiate. Therefore, chemotherapy was a sound stop-gap approach to holding off radiation if the tumour was to grow back and we always knew that there was a strong chance of that happening. Charlotte now requires six weeks of focal radiation which is radiation that is conformed only to the area where the tumour has regrown.

For Charlotte this treatment will be a lot easier than the 14-months of chemo and 13 surgeries which she has already endured. Having said that, she has another tough road ahead with a general anaesthetic administered each day for radiation and a range of short-term side-effects, long-term side-effects and complications. It takes a lot for Rod and I to get our head around how anyone, let alone a four-year-old deserves to have to face yet another medical journey like this. It looks like at least a month before treatment will commence as we need to wait for the surgery/wound to completely heal and a period of preparation is required by the radio-oncologist. So, it is likely that we will be still moving through treatment well into January next year.

Thank you for your messages and empathy leading into this meeting and I am sorry that I did not get to return all the text messages sent in the last day. We are very grateful for the support and warmth that we are afforded.

Love,

Beck and Rod xo

ATTENTION: COME AND WATCH ROD SHAVE HIS HEAD to help raise money for the SCH FOUNDATION

AT: Woollahra Colleagues Rugby Club, Woollahra Oval, Rose Bay

WHEN: Sunday, 28th October, 2012

TIME: 2-6pm

$30 a family

$10 an individual

If you have any time please come along and support the SCH and have a good laugh at Rod as he goes bald for a good cause!!!!!

 

Charlie Progress - Tuesday, 23 October 2012

October 23, 2012

Sorry about the delay in feedback about Charlotte’s progress but Rod and I are taking a bit longer to get over being in hospital and still getting our heads around Charlie’s condition. She is still doing well after surgery despite a tough run of fasting for yet another MRI under anaesthetic. She has lost a lot of weight and we are trying to feed her up and keep her rested. She has been struggling with a chest infection which she needs to totally get through before we move onto the next phase of treatment. We have a team meeting on Thursday afternoon to discuss the pathology of the tumour and a possible course of action.

We have been trying the read and determine the best path for Charlie’s treatment and preparing for what the team might suggest after considering Charlotte’s tumour histology and prior treatment. There isn’t a lot of room to move and we need to get this right for her; otherwise the options are slim. I have been reading medical journal after medical journal trying to make sense of the types of treatment (mainly radiotherapy) and what is best for a positive prognosis. The path forward is heartbreaking and it is one of those times in life where having something rare and special is not a constructive thing!!

I have generalised some of my reading  - radiotherapy and radiosurgery for the treatment of paediatric supratentorial anaplastic ependymoma*

* Supratentorial anaplastic ependymoma (III) are relatively uncommon.

*  Ependymoma is a surgical disease.

*  Very little literature, randomised studies or clinical trials exist to suggest any real advances being made for the treatment of these tumours or any new strategies being used. Simply, intensive chemotherapy, hyperfractionated radiotherapy (Bouffet et al. 1998. p. 319) and radiosurgery (gamma knife or cyber knife) seem to be the modalities at present.

*  In spite of this, technical advances have improved the operability of this tumour in recent decades (Bouffet et al., 1998, p.322).

*  Radiotherapy is still considered the standard adjuvant treatment in intracranial ependymomas (p.323)

* However, there is little evidence to measure the benefit and response of this modality of treatment.

*  Roger (2004) suggests that there is no evidence to support the use of external field or craniospinal radiotherapy (p.459).

*  He goes further to highlight in his review of radiotherapy that there is a worse outcome for anaplastic ependymoma (p.459).

*  Gamma Knife or frame-based radiosurgery does not seem appropriate for young children due to their thin skulls (Giller et al., 2005, p.308). Cyber knife (possibly not available in Aust.) seems more attractive because less anaesthesia is required, no external frame for the skull is used and due to the precision; often single-shot radiosurgery could be possible (Giller, p.308). Additionally, hyperfractionated regimens over a few days are also possible, adding safety to the treatment of paediatric tumours that may be large or eloquently placed (p.308).

*  In their research paper on new therapeutic approaches to ependymoma treatment, Merchant & Fouladi (2005) suggest that radiosurgery (high-dose single fraction radiation therapy) to small intracranial targets has been used with limited success (p.293). But there is still a renewed interest in radiation therapy as a means to disease control. (p. 287).

*  So, it will be interesting to have the histology back and team meeting on Thursday to make the best decision possible for Charlotte!

Thanks again to our beautiful family and friends, thank you for the messages of support and thank you for the prayers and well-wishes. It is certainly harder this time around and we are faced with the heartbreak of putting Charlotte through all this again. It really is too much for any four year-old to have to confront. But as always she makes us laugh and has a gorgeous and fresh way of dealing with everything. She aptly let us know that her head was sore but not hurting following surgery and when we arrived home she skipped up the hallway proclaiming that her head squeaks when she walks!!!!! We were not sure whether to laugh or cringe!!!!!! Finally, when she actually got to look in the mirror she said; “what have they done with my hair?”, then she brushed her hair over the scar and stitches and said “look you can’t see it now!” – truly gorgeous

She makes me think about William Blake’s Auguries of Innocence

To see the world in a grain of sand,

And hold heaven in a wild flower,

Hold infinity in the palm of your hand,

And eternity in an hour..”

Love,
Beck and Rod xo

 

Tuesday, 16 October 2012 – Operation Day

October 16, 2012

Rod, Charlotte and I were admitted yesterday into the Care by Parent ward at the Sydney Children's Hospital, which is like a little hotel compared to what we have experienced with Charlotte. This ward is designed as a calm and comfortable place for pre-operation care (primarily by parents). She underwent anaesthetic the best she ever has – no screaming, fairly calm and holding the oxygen mask all on her own. It was a relatively short surgery by Charlotte’s standards and almost four hours later she was back in ICU. By the afternoon she was off ventilation, awake, talking and eating. In fact, the nurses thought she was going to vomit because she had such a large amount of food. By 7pm she had eaten five pieces of toast, half of my chicken and potato salad, six cookies, two large rice crackers and fish and chips! We had some family and friends visiting in pairs in the afternoon, as she was doing so well. This also included her medical team; everyone was delighted by Charlotte’s progress. She also kept the nurses on their toes, asking for explanations about the numerous cords, monitors and machines that she found herself attached to. Surgically, Dr Erica was able to resect the tumour on her frontal lobe, as well as some of the brain (frontal lobe) around the area so as not to disturb the tumour bed, along with a small nodule of tumour  that was not seen in the scans but found during surgery. Erica also removed the reservoir in the front of her head, which was not being used and was in the way of removing the tumour. Overall, the incision is quite small compared to her first surgery and she is doing “Charlie well”. The tumour has been sent off to pathology for assessment and to help determine a plan of attack for further treatment. A successful but exhausting  day all round.

Beck and Rod XO

 

Latest Update

October 14, 2012

Hi there once again,

It's been a while, thank you to all of you who have continued to read and write and follow Charlie's progress. I personally have removed myself some what from this page, but am pleased when I return periodically to see the on going messages of support.

Obviously we are all saddened by the latest result. Our emotions are in turmoil, those of anger, fear, and sadness to name but a few. However we find much happiness in Charlie and Madeleline, they are not burdened with our worries ( we do our best to disguise), they continue to laugh, cuddle, annoy and love.

Charlotte under went another MRI yesterday to look for any further tumor in the spinal regions. We are thankful that there is no further evidence to indicate this. Poor Beck had to endure parenting advice from a intern anesthetist with regard to Charlotte. Needless to see he received more feed back than he bargained for.

At this stage, what we know is, Charlotte will be going in to hospital on Monday in preparation for her operation to resect the tumor on Tuesday.  We are not sure what the plan is after the operation. We do expect a course of radio therapy.

Thankfully we enjoyed a wonderful time in Queensland, spending some time with the Long's (Charlies god father Greg and Pete the web sit administrator, thanks). We went to Sea World and Dream World. Charlie was able to recite in great detail the 4 days to her Aunty Tara in London on our return.

Charlotte and Madeleine are now aware, to a degree, of what lies ahead and have received the news better than we expected. It was a discussion Beck and I had hoped would never happen but always thought, in the back of our minds to be possible

Thank you for your on going support

Love,

Rod, Beck, Madeleine and Charlotte

 
 
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