Emily's Journey

As 2011 draws to an end I thought I would update ‘Emily’s Journey’ and reflect on this part of the cancer journey… I call it the ‘normal/hopeful/fearful phase’ …. a bittersweet stage that evokes many emotions and challenges your inner strength. I am generally a ‘glass half full’ kind of person so most of the time I am hopeful, however lately I have been struggling with all this cancer business. It never goes away, regardless of how well your child is doing. why?? Because you worry about other children! The bonds you form with other families in the hospital are difficult to describe unless you have experienced it, and when you hear of kids , who endured treatment alongside Emily, that have since relapsed or passed away it kicks you in the guts and you share some of the parents’ anguish and devastation. Obviously I don’t know what it is like to lose a child.. but man were we close. That kick in the guts feeling is then followed by the survivor guilt you experience when the families reliving this nightmare ask how Emily is doing and you say “Em is great.” Don’t get me wrong, I am so so grateful that Emily is doing well, it is just hard because during treatment we all had the same goal… to get our kids into remission and keep them that way, then all of a sudden that favourite word remission becomes relapse or terminally ill for some families…. It is for this reason that I have been reluctant to update Emily’s blog, but today it dawned on me that people may actually WANT to know that Emily is doing well and who was I to not let the people that have supported us so much know that she is doing well and remains cancer free. If Emily relapses ( heaven forbid ) I would want to know that other kids are beating the dreaded “C”. No one begrudges a healthy child right?? I certainly wouldn’t.

So here goes … Emily’s 2011…. school full time with an amazing class and teacher, touch rugby on Tuesdays, swimming lessons on Thursdays, Kapa Haka group at school, sleep overs, birthday parties etc etc. Oh and she got her ears pierced! Typical 8 year old activities. Amazing. Emily received a certificate in school assembly that was awarded for ‘strength, persistence and excellence following an extended absence from school’. This pretty much sums up the head space she is in. She is strong and doesn’t dwell on the events of 2010. The word cancer, or poor me is pretty much absent from her vocabulary, however the empathy she gained from her experiences is evident. I am so proud of Emily’s achievements this year and equally as proud of my other kids. Em will be attending Camp Quality at Living Springs for a week in Jan 2012! She is so excited! She deserves it! Medically Emily continues to do well also. Having just the one kidney or walking on her tip toes hasn’t held her back from anything. Em continues to get physio for her tip toe walking and will commence a re-immunisation schedule in the near future. The chemo wiped out all the immunisations she has had since she was born so she has to have them all again. She has put on 6 kgs since finishing treatment in Feb, and now weighs in at 25kgs! With regards to scans to check for relapse, Emily continues to have 3 monthly scans until Feb 2012, then she will change to 6 monthly scans. Her chest/abdomen/pelvis scan in December was clear thankfully. I never tell Emily the result or make a big deal out of it. She never asks and a scan is just another procedure to her. My scanxiety levels were the worst thus far in Dec as Emily was having leg pains (which in hind sight would’ve been from touch rugby). Difficult not to worry about every niggle they have though. The uncertainty is mental torture, but all you can do is be hopeful and enjoy every day that they are well. I could be worrying obsessively over Em relapsing and meanwhile (again heaven forbid) something could happen to Jack, Charlotte or Luke. The “what if’s??” can do your head in… if you let them. Most days I choose not to let them.. but I am human, so I am allowed to be fearful at times. So that is where Emily and I are at at this stage if the journey. I am hoping for a cancer free/ normal/hopeful/sometimes fearful 2012. I will channel some energy into productive things like fundraising for www.chaseafteracure.com., enjoying my healthy kids, my family, and my friends ( because I deserve to ) and keep those who have lost ( or are battling to keep ) their precious kids in my thoughts, and be there for them if they need me!! Life goes on and I need to live it….

Kath

Hi everyone,

First I want to say that over the last 8 months (ie. since her treatment ended) Emily has had the most amazing times with friends and family and is living life to the full!   She has been attending school full time, rarely having a day off! She also went to Lake Tekapo for her Make-A-Wish. The whole family went and it was brilliant! Emily looks amazing.

Today she had the second of her three monthly CT scans. Emily’s amazing Oncologist phoned me up within hours of the scan. Fortunately there was no evidence of disease. Whilst this is the best news for us, it is overshadowed by the fact that 2 children that had the EXACT same cancer and EXACT same treatment regime as Emily at the EXACT same time have since relapsed. Whilst I don’t know these children (I know of them and liase with their parents occasionally), this is a hard pill to swallow for me and the reality of this living hell really hits home when I hear that this monster of a disease has returned to their child/family! I feel completely helpless and wish I could do something.  An amazing family in America, whose son Chase had Neuroblastoma (he is in remission thankfully) started up an organisation called Chase After A Cure. Whitney, the Director of the organisation (and Chase’s Mum) has raised over $200,000 for Neuroblastoma research in the last couple of years. She has turned her fear of her child potentially relapsing into fundraising.  I’d like to share the website with you. There is the opportunity to donate money or purchase T-Shirts, Wrist Bands or Pandora Beads. I have done so and received the goods in approx 3 weeks. Research is the only way to find a cure for this horrible disease. www.chaseafteracure.com  Emily’s story is also on this website.

Sorry I haven’t updated for a while. Normality has been fantastic and right now all the family is doing great :)

Emily celebrated her 8th birthday with her friends on the weekend.

Kath

Had Em’s end of treatment meeting Friday. She’ll be having CT scans and various other tests every 3 months for the next 3 years. Emily has a 50% chance of the Neuroblastoma returning but has surprised medical staff with achieving a COMPLETE remission. There are no treatment options for Emily should she relapse :( Time to get some fundraising underway for Neuroblastoma research!

Kath

Clear scans and clear bone marrow!  Emily has NO EVIDENCE OF DISEASE!

Some great news amidst some challenging Christchurch days.

First Place – Mark Connolly - Ticket Number 0862

Second Place – Morgan Edwards – Ticket number 0442

Third Place – Pam Webber – Ticket Number 0541

Fourth Place – Mark – Ticket Number 0129

The draw was done this morning under police supervision.  Congratulations to the winners.  Thanks very much for all the support.  In some cases individuals sold up to 80 tickets.   We managed to raise $4,800! Some of this money will be spent on ‘play items’ for the Child Cancer ward as compiled by the nurses and playroom staff.

Gary and Family

Emily’s inpatient treatment is finally finished so no more hospital overnight stays for Emily! What a year she has had! So pleased to see the back of 2010. Here’s a recap of what Em went through from Nov 2009 until Jan 2011…

November 09 – Jan 2010 = 9 weeks of feeling unbelievably unwell with zero appetite, lethargy, and horrific bone pain that required Gary or myself to have to rub her wee body every hour during the night. Could only manage to move from the couch to her bed. Lost 4kg from her already slim frame. 3 hospital stays during this time to figure out what was wrong with Emily. Diagnosed with a virus that was masking the Neuroblastoma. We were so worried about her, and as awful as it sounds, Emily was literally dying before our eyes. Her complexion was grey and her eyes had no spark.. and we wanted that spark back… TODAY THE SPARK IS BACK!! : )

Jan 8th 2010 – After finding a mass in Em’s abdomen and a lump on her skull, a CT scan was performed and a biopsy of the lump/tumour took place.  Emily was diagnosed with Stage 4 Neuroblastoma and given a 20% chance of survival. The outlook was so poor due to her age and the fact that the cancer was widespread. The news was devastating and effected so many people… especially her Mum and Dad :(

• Jan 13th Em commenced her first round of chemotherapy. Emily’s bone pain was gone after round one. One saving grace.
• 8 more rounds of chemo.. every 10 days ( each round lasting 3 days). In hosp for a month following diagnosis. Had a tube inserted into her kidney as kidney was dilated from the pressure for the tumour.
• Countless temperatures between chemo rounds meaning back to the hospital she went… for IV antibiotics.
• So much vomiting I don’t even won’t to think about it.
• An infection in the bowel (typhlitis) as a result of the intense chemo (an 18 night hospital stay for that).
• Required naso-gastric feeding for 10 months due to loss of appetite/weight caused by the chemo.
• The psychological issues re losing her hair and not feeling “normal” or “pretty”.
• 6 bone marrow aspirations to check the amount of Neuroblastoma in the bone marrow
• 13 general anaesthetics, countless scans, xrays, tubes in her nose, blood tests, injections, painful dressing changes where her central intravenous line is on her chest.
• High Dose Chemo and a stem cell transplant (26 nights in hospital for that). Painful mucositis (Google it), morphine, morphine and more morphine.
• Surgery to remove her tumour and her left kidney (as the kidney’s blood supply was feeding the tumour). In HDU for 4 nights, then recovered in CHOC for another week.
• 14 rounds of radiation to the area where the tumour was removed.
• 5 rounds of painful antibody therapy
• 6 months of Accutane (a drug that helps prevent relapse). Em is on this until the end of Feb. Causes severe skin dryness and sensitivity.

We are so thankful for the amazing staff on the CHOC ward. Nurses, doctors, surgeons, play specialists, dieticians etc. An awesome collaboration of exceptional staff.  Emily has had top notch treatment and I can’t fault our health care system when it comes to receiving optimal care.

These are just the things I remember… I’m sure I’ve blocked some of it out… as has Emily.

Last week, Emily attended her first Camp Quality camp (a camp for children living with cancer).  She had the most amazing time!  Emily is now looking forward to starting school with the rest of her classmates on 2 February.

Emily you are amazing and have been through more than anybody should have to go through in any lifetime.  You are so brave and have taught so many people so much. You have earnt each and every one of your 831 beads of courage and we are all SO THANKFUL you are still here with us! :) I will update the blog after every scan.  Next one is in March, but other than that I won’t be writing about our ‘normal’ life – that’ll probably be on facebook :)

Thought I’d sign off with a story Em wrote on one of the days she got to school last year. We think the ‘cat’ is the ‘cancer’… you’ll know what I mean when you read it.  I’ll write it exactly as Emily did.

Once there lived a mouse and a cat. They were enames for a long time. One day insted of hurting each other they thought of killing each other. The mouse won. So the cat died so that was the end of the cat!

Thanks for all your support. Love to you all.

Kath, Gary and family x

Hi Everyone,

As you probably know we are running a raffle to raise money to buy some books/DVD’s/games for the Child Cancer Unit where Emily has spent a lot of the year.

Due to logistical issues with getting the ticket stubs back from Auckland we need to postpone the draw until the 24th January.  We will post the results on this blog shortly after.

Gary

A year ago today Emily was diagnosed with Cancer and given a 20% chance of survival. A parents worst nightmare! She was completely riddled with Cancer. Today, after a courageous, grueling battle Emily is disease free ( according to scans ). Whether or not Emily relapses is completely out of our control, but today.. all is well! Long may that last!!! So proud of our wee fighter!

Just one more round of treatment to go for Emily (in hosp from Jan 9th til the 14th )…PHEW!… then oral medicines with lots of yucky side effects until Feb 27th… then 3 monthly scans to check for relapse. Fingers toes and eyes crossed! Thanks everyone for your support this year. You all know who you are.

Kath x

Emily took a week and a half to recover from round four of the antibody/interleukin 2 treatment so felt pretty average on Christmas day but was still much better than last year! Em turned a real corner on the 27th of Dec and is now eating really well and has lots of energy. Even managed a sleepover with her bestie Jaime last night. Jaime’s Mum Wendy said it was just like old times. Music to my ears. Emily’s 5th and FINAL round of antibody therapy will be from the 10th til the 14th of January… then it’s fingers crossed for a cancer free life! Emily will continue to have medicines until the end of Feb but these can just be given at home. The medicine ( Isotretinoin) gives Emily terribly dry skin and makes her very self conscious. It will clear up in no time though. She is still very beautiful and her hair is growing back very quickly. After the next round of treatment we will have an end of treatment meeting at some stage with Emily’s oncologist. I will update after Round 5 (with a recap of the year Emily has had) and then again after Emily’s end of treatment meeting. We hope everyone had a lovely Christmas. Having Emily around was our best Christmas present for sure! Here’s to a healthy happy 2011.

Kath x

Emily is happy to be home and able to sleep in her own room.  We had a really fun Christmas BBQ tonight and Em was in good spirits.  I even convinced her to ‘fan me’ (because it was so hot), the going rate was 50 cents for 5 minutes – BARGAIN!

Vanessa

Today was not such a good day.  Kath and Em are looking forward to going home tomorrow.

Vanessa & Leona

Emily is coping well with this round of treatment.  Home Friday – not much to report.

Vanessa & Leona

Emily is having Interleukin-2 medicine in the hospital this week.  This is a white blood cell stimulating medicine that runs intravenously over 4 days.  Next week she will have the same course of treatment, with the antibody therapy running simultaneously.   Then Round 4 is finished.  Only Round 5 to go from January 10-14.  Then she is done!

Emily will be home for Christmas and New Years – the best present for her and definitely the BEST present for us!  Emily was so, so sick last Christmas and spent the day in bed – not this Christmas!

Kath

The Rolleston firefighters are participating in this year’s Funrazor to support child cancer.  They will be at Rolleston BP from 10am this Saturday 4th December.

Kath

Emily finished round 3 of Antibody Therapy today.  She coped well.

We will have to go back to hospital every morning during the next week for blood tests and injections to stimulate white blood cells.  Round 4 will start in two weeks and Emily will be in hopsital for another two weeks.  We are hoping that Emily will get to school as much as possible over the next fortnight.

Emily’s nurse was awesome this week baking cookies and cupcakes for her to ice.  The staff in CHOC are incredible.  Thanks again for all the meals from friends and support from Mum, Steve and Fliss with the other children.

Beads of courage: 646

Kath

“Mum, Mum, I have enough hair for  a hair clip!”

Emily’s hair is growing heaps.  She is feeling awesome at the moment and has put on one and a half kilograms since her last round of treatment.  She has been to school as much as she can and has loved every minute of it.

Yesterday, Emily went on a 4-seater plane trip over Christchurch courtesy of the wonderful staff at the Canterbury Aero Club.

Round 3 of Antibody Therapy starts tomorrow.

Kath

Emily finished round 2 of her Antibody Therapy on Friday morning and recovered within 24 hours.  As horrible as the treatment is, fortunately she bounces back quickly, unlike chemo where she would get home and bottom out, spiking temps, vomiting and often ending up back in hospital.

Emily felt well enough to attend her classmate’s Halloween themed birthday party on Saturday (she went as a vampire).  She went to school for a half day today and coped really well.  She was comfortable in not wearing a hat to school and said that if anyone commented on the tube in her nose, “I’ll tell them that I put spaghetti pasta up my nose and sellotaped it to my cheek!”

Round 3 of the Antibody Therapy commences on November 15th so the next three weeks will be relatively ‘normal’ and she will go to school as much as she can.  Two rounds down, three to go!

We are constantly keeping the bigger picture in mind.  Statistically this therapy will boost Em’s chances of survival from 20% to 66%.  Ultimately this still means that 34% relapse so we ever hopeful of a cure.  However, as research continues, these statistics can only get better.  Keep fighting Em, not long to go now!

Kath

Emily commenced her second round of antibody therapy yesterday morning.  She coped well for the first few hours, then the side effects kicked in and she had a very unsettled night.  She developed a worrisome rash and had an unrelenting cough that caused her to vomit.  Today wasn’t much better…

Emily was unrecognisable today.  I just about fell over when I walked into the room because of her temperature, rash and fluid overload.  The pictures say it all really.  The infusion had to be stopped for a few hours as her blood pressure became dangerously low.  It commenced again at 5pm.  Cruel to be kind.

Kath

Emily is at home now after a tiring week in hospital receiving a treatment that produces a mass number of white blood cells. The side effects were supposed to be severe flu like symptoms but fortunately Emily coped well. Her appetite decreased dramatically though and another gastric tube had to be put in today. She is NOT happy and thinks that everyone will stare at her again.”Cancer has really changed my life” Emily said in a sad tone. Broke my heart.

Emily will go back to hospital Sunday evening for blood tests and a possible blood transfusion, then commence round two of the antibody therapy early Monday morning. They are commencing the pain relief regime even before the infusion starts to help with the horrific pain she experiences when the antibody attaches to normal nerve cells. Angry Emily will come to the forefront next week and then when the treatment is finished she will return to her usual polite unassuming demeanor. Almost like a flick of a switch. She is totally allowed to be angry!

13 weeks of treatment to go… roll on 2011! Thanks again for everyone’s support.

Kath

Emily has enjoyed some time with family and friends throughout the holidays. Last week she went to a two day drama course with her cousin Jaymee and performed as a bird in a Little Red Riding Hood play.  Kath said, “she was cute and confident”.

This week Emily is back in hospital.  A 96 hour continuous infusion of Interleukin-2 began today.  This infusion stimulates a mass production of white blood cells in order to help the antibody therapy work to its full potential.  Round two of antibody therapy starts next Monday.

Beads of courage: 588

Leona & Vanessa

Emily has been at home this week but has been making daily trips to the hospital for blood test etc.

Check out the following site, Treating Neurobalstoma – CBS News Video (make sure you watch the video).  Scroll down to Hayley’s Story, the one with the 2 girls holding hands.

http://www.cbsnews.com/stories/2010/09/29/eveningnews/main6912677.shtml

My name is Vanessa and I am one of the blog administrators and went to high school with Katherine.  I would like to share my thoughts and what I have seen through this latest round of treatment.

I had the privilege of spending some one-on-one time with Emily on Tuesday night.  Going through this journey has given her wisdom and maturity beyond her years.  That makes me sad, but she is a stronger person for it.  I must admit that I love seeing her ‘fight back’ and she did plenty of that Tuesday night!  She will not allow herself to be tricked or patronised.  She is sick and tired of people saying and calling her “good girl, pretty princess, pretty in pink etc”.  One day she even dressed totally in blue, head to toe, just so nobody could comment.  She constantly has people in her room making ‘small talk’ – I can only imagine how tiring that must be. To use her own words she is tired of people being ‘in her face’.

 It has been 9 months, she is quite simply tired.

Words do not do justice to the job Kath and Woody are doing.  They need to be her ally, her protector, her encourager and her confidant.  They need to constantly maintain her trust, meaning they always need to tell her the truth, as difficult as that can be at times.  She is far too smart and aware to be mislead.  They need to advocate for Emily while still working with the nurses to get the job done.  Emily may be having all the medicine and procedures but Kath and Woody endure them alongside her.  They are having to watch their precious little girl being poked and prodded every hour of the day and throughout the night.  It must feel tiring and unrelenting.

Through this treatment, Woody has spent his nights sleeping alongside Emily, and his days going to work.  Katherine spends her days with Emily and her nights running their household, and caring for their 3 other children.  Incredible.  Sherilyn and Aunty Chris has been an amazing support in helping care for Jack, Charlotte and Luke.  When you are juggling so many balls and are mentally, emotionally and physically exhausted, even the everyday tasks become difficult.  It would be fair to say the treatment is taking a toll on the entire family.

I feel privileged, as I know you all do, to witness the incredible strength and courage shown by everyone affected by Emily’s diagnosis.  Sometimes as I walk back to work from the hospital, I see people laughing and enjoying the spring weather.  I think, “Don’t they know Emily is in that hospital fighting for her life”.  Then I think, that will be us soon, laughing in the sunshine.

We love you Emily and are all so proud of you.

We promise not to call you ‘Princess’.

 Vanessa

Some pics of Emily and a very wary and concerned Mother! Taken when her pain had subsided a bit. She would not look at the camera.

Emily has almost completed her first block of antibody treatment. She is the second child in NZ to have the treatment so a specific team of nurses and doctors have been assigned to her care. We have all been very anxious re the side effects Emily would experience.

The treatment has been really hard for Emily. Loads of pain (requiring morphine and other strong analgesics), nausea and a relentless cough caused by the antibody attaching to the nerves in her lungs/windpipe. She has required a nebuliser and oxygen to get on top of it.  She has been very angry at the nurses as has to be monitored 24/7 and constantly has someone taking blood pressures, temp etc (not fun when you are too sore to be touched). A very angry girl at the moment (understandably).. with a fighting spirit that has helped her through this journey!

This is the first round of antibody treatment, four to go over the next four months with loads of medicines and hospital appointments in between.

It has been very very difficult to watch Emily in so much pain. We’re on the count down now til the treatment finishes – trying to keep the bigger picture in mind. ie. that this therapy will give her the best chance at long term survival.  Just hard to see her suffering at the moment.

Hopefully she will be out of hospital tomorrow just in time to celebrate her little brother’s birthday.  Happy 5th birthday Jack!

Kath

This week Emily has been having some preliminary tests to ensure she is well enough for the antibody therapy that will commence on Mon Sept 20th. She has had heart tests, kidney function tests, blood tests etc.  Lots of daily appointments. All of the tests have been ok which means the treatment can take place. Whilst Gary and I are so pleased that Emily is able to have the antibody therapy, the side effects are frightening and we are so over seeing our wee girl in pain.  The antibodies attach to any potential residual neuroblastoma cells, her immune system then recognizes these cells as foreign and attempts to kill the cells, just as our body would fight an infection. Because the antibodies can also attach to normal nerve cells it can cause horrific pain, therefore a morphine infusion will be running simultaneously. There are many other side effects that she may or may not experience.. fingers crossed she copes OK! Next week the infusion will be for ten hours a day over a four day period. Emily will be an inpatient for this period of time. Emily is only the second child in NZ to ever receive the antibody therapy.

On a more positive note, the MIBG CT scan (MIBG is the dye injected to highlight any neuroblastoma cells) came back clear! And there was no evidence of Neuroblastoma cells in the bone marrow. Amazing. Emily’s bone marrow was tested a couple of weeks ago, (under her 11th general anaesthetic) so we have been fairly anxious for results but assumed no news was good news! So Emily’s Cancer status is considered to be NED… NO EVIDENCE OF DISEASE.. long may that last…. The oncologist today suggested that the cancer cells may have been present from birth, hence they were infantile cells that responded better to treatment…but who knows? She has come so far considering only 9 months ago she was riddled with Neuroblastoma…

So the idea of the next phase of treatment (antibody therapy) is to kill any potential residual neuroblastoma cells that may have not been picked up on the scans. Obviously we have billions of cells in the body and scans can only tell you so much.  We like what the scans are saying at the moment for sure!

This phase of treatment will take place every couple of weeks until February. The potential reactions/side effects she experiences will dictate if it needs to be stopped earlier.  Very bitter sweet this treatment. Emily has had a few glimpses of normality over the last couple of weeks with some school time and her fabulous birthday party.. hopefully these fun times get her through the next phase and give her something to work towards.  Thanks again for everyone’s support. Will update after next weeks round of treatment.

Beads of courage 536…

Kath

Yesterday was Emily’s 7th Birthday.  Her mum and dad organised a surprise party with her her classmates.  They were entertained by a magician, followed by afternoon tea and cake.

Thank you to everyone who helped to make this such a special day for Emily.

Vanessa & Leona

What a day in Christchurch.  The Wooddin’s spent a lot of the day in their ‘bunker’.  Four children take a while to round up at 4.35 in the morning! Tonight they’re all sleeping on a mattress in the lounge – together.

Emily and her family have almost recovered from the swine flu.  Em was able to use tamiflu so has recovered much quicker than the rest of the family.  Coming up this week are a number of tests prior to starting the antibody therapy.  Today she had a heart scan, to check her heart is strong enough for the next treatment, and was suppose to have a CT scan.  This scan has been postponed to Wednesday due to not being able to have it within 5 days of radiation.  Emily is very anxious as she doesn’t like the luer they put in to inject the dye before the scan.  Tuesday is bone marrow testing.  This marrow will be sent to the United States.

It has been a hectic couple of weeks but thankfully Emily didn’t get this flu while she was on chemotherapy.  She would have struggled to fight it as she had no immunity.

On a more ’6 almost 7 year old’ note Emily has lost 3 teeth this week.

Vanessa & Leona

Emily has 2 radiation treatments to go.  She is coping really well.  The oncologist has given the go ahead for Emily to have half days at school when she is up to it.  Next week there will be loads of appointments in preparation to start the antibody therapy.  Hopefully she will get to go to school at some stage between these appointments.

Emily is so excited about going back to school, she told Katherine that she could stay with her for the first three times and then ‘my friends will take good care of me’.  Today she went with her Dad to get a new school bag, lunch box and drink bottle after radiation.

Great news – the blog space has been extended so we welcome ‘comments’ again.

Vanessa & Leona

Day 6 of radiation treatment today.  Emily is starting to get a red patch on her back that looks like mild sunburn.  Emily also had a blood transfusion today as her iron levels have to remain above 100 throughout the radiation treatment.  They were 98.  She was not impressed to be in hospital for the whole day.  She’s getting used to a lot more home time.   Eating is still a constant battle.  We’ll get there!

Beads of Courage 496

Kath