“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
Emily is coping well with her radiation treatment so far. She has vomitted a few times but overall it’s well controlled with anti nausea medication. A walk in the park compared to previous treatments. 9 treatments to go.
Emily will be commencing the antibody therapy regime on September 11th. The day after her 7th birthday! Needless to say this years birthday is a milestone for Emily and we are so thankful that she is still with us. Hopefully we have many more birthdays to celebrate in the future. Will update again next week.
Kath
Today Emily had the first of her 14 days of radiation treatment. It was fairly stress free and the actual treatment only took about two minutes. Took longer to get there and back home. The petrol vouchers all the kind people gave to us are definitely being put to good use considering we have to go in to hospital almost every day at the moment. THANKS!!
The radiation goes directly onto the sight where her kidney was removed to target any remaining cancer cells that could be present. It’s apparently fairly low dose and shouldn’t cause too many side effects. Emily takes anti sickness medication prior to treatment to help with any nausea she may experience.
We found out today that Emily is eligible to take part in a clinical trial using antibody therapy. She is eligible because she has responded so well to previous treatments. The aim of the antibody therapy is to attach itself to any remaining neuroblastoma cells and encourage Emily’s own immune system to fight it. This has been shown to improve survival rates of children with high risk Neuroblastoma. The trial is fairly new so the long term benefits of the treatment are unknown. I won’t go into statistics…
This will take place over the next six months commencing mid September. It involves several 5 – 10 day stints in hospital (overnight) to administer the intravenous therapy. Because the antibodies attach to nerve cells the therapy can be very painful, therefore IV morphine will be administered throughout the many infusions. Unfortunately nothing is without horrific side effects for these little ones. BUT if it potentially helps with long term survival then we have to go ahead with it. This should be the last leg of her treatment and at least its not chemo!
On a brighter note, hopefully Emily will be able to attend school in short bursts between treatments. AND her beautiful eyelashes have nearly all grown back! The hair will take a while but it’s a work in progress.
Kath
Unfortunately comments are closed on the blog for the time being while we figure out how to get more space! Please feel free to send Katherine your messages on Facebook where she will check them regularly.
Hi everyone, Kath here. Thought I’d do a quick blog update and thank everybody again for their continuous support and concern for Emily and our family. It has helped us significantly throughout the last 8 months. We are extremely appreciative.
Emily is doing well at home. She continues to have frequent visits from the Outreach Nurse for blood tests, dressing changes etc. Nourishment still remains a challenge with a poor appetite that should improve over the coming months. She still requires her nasogastric feed overnight to ensure an adequate intake of calories. The multitude of medicines Emily takes no doubt plays a big part in her lack of appetite. Her blood tests however have been great and all her levels have been within the normal ranges for the last month or so, meaning she hasn’t required blood transfusions etc. She’s holding her own basically.
Last Friday Emily had her post surgery check up. The surgeons were pleased with how her surgical wound has healed and said that the surgery went well. The marble sized tumour that was removed has since been biopsied and showed that 30 percent of the cells in the tissue had viable neuroblastoma cells that could have “flared up” again. The removal of the tumour was therefore critical. The surgeon remained confident that they had removed it in it’s entirety.
Emily also had her radiation planning appointment on Friday. This required her to be very still whilst they marked out the exact location on her body for treatment to take place. They had to tattoo three areas on her body so that each radiation treatment will be given in exactly the right spot every time. Her 3 weeks of radiation treatment begins next Monday.
Will update again in a couple of weeks to let everyone know how her radiation treatment is going.
Vanessa & Leona
Emily is continuing to do well at home. She is having a CT scan tomorrow to plan for her radiation treatment. This treatment will start on Monday 9 August and will require 3 weeks worth of daily half hour appointments (the radiation procedure itself takes about 3 minutes).
Leona
Emily got home from hospital yesterday afternoon. She is exhausted and has lost 2 kgs. She is off all pain relief.
The Wooddins are now waiting to hear when the radiation treatment will take place. We will give more details about this when we know what’s happening.
For the time being, the focus will be on Emily gaining weight and strength at home.
Beads of Courage: 469
Leona & Vanessa
Emily is still in hospital recovering from her surgery. She is out of the High Dependency Unit and back in CHOC. She is not allowed to eat until her bowels are working properly, as they don’t function for a few days after surgery. Kath said that Emily is “hungry, grumpy and sore but otherwise healing well”.
Leona & Vanessa
Emily’s surgery today was successful. The tumor had shrunk to the size of a marble (at diagnosis it was the size of a peach) and shared the same blood supply as the kidney so it was also removed. All went well. She has been sleeping for most of the day.
Due to space on this site we have closed comments for the time being but we can still be contacted via the ‘contact me’ option.
Vanessa & Leona
Emily is back in hospital for a few days getting IV antibiotics to clear up an infection around the nephrostomy (tube) site. Her surgery is scheduled for the 16th of July.
Vanessa
Yesterday Emily and Jaymee had a lovely visit with Margaret Mahy at her Governors Bay home. Thanks to Aunty Chris for organising this special outing.
We are waiting on a surgery date to remove Emily’s left kidney and the tumour which is attached. She is enjoying time at home with the odd visit to hospital for dressing changes and medication reviews.
Vanessa
At 12:31am on Saturday 26 June, Kath and Gary welcomed Luke Thomas Wooddin (7lb 3) into the world.
The Wooddin’s are all doing well and are loving this happy and exciting time.
Leona & Vanessa
Emily is doing well. She has been in hospital this afternoon for a platelets transfusion. Emily has asked us to tell everyone that she doesn’t want any more presents, as she wants to enjoy her birthday (in September)….. we think that’s fair enough. Kath has said, that whilst she has been appreciative of the gifts, she has been inundated with material things and is craving normality.
We will be updating the blog less frequently, but will be sure to keep everyone informed of subsequent treatments and any news.
Vanessa & Leona
After 26 days in hospital, Emily got to go home today!
The stem cell transplant means her immunity will be compromised for the next few months so she is on a multitude of medications. Emily will continue to have frequent trips into the hospital for various tests and medication adjustments.
The next treatment will be surgery to remove both the inactive tumor and her left kidney. This will take place in the next few weeks.
Emily is doing really well. She is very tired and incredibly happy to be home.
The Wooddin’s are now waiting for the arrival of their new baby, due in less than 2 weeks!
Thanks again for all of your support, especially throughout this last round of treatment.
Leona & Vanessa
Emily is improving a little bit each day.
At the moment she is having trouble tolerating her nasogastric feed and has been vomiting at times. It can take a while for the gut to adjust after the effects of the chemo and mucositis. Emily won’t be able to go home until her nutrition is sorted.
Leona
Emily was weaned off the morphine today. She will be slowly weaning off the intravenous nutrition over the next few days. Tonight Emily is very tired but more comfortable.
Beads of courage – 423!
Leona
This photo gives an indication of how much poking and prodding Emily has to cope with each day – every couple of hours the nurses are required to take blood and give several medications through her Hickman line.
Stem cells are expected to begin grafting 10-21 days after being infused. Yesterday was day 10 and last night Em’s bloods came back showing evidence of white blood cells. This is great news! Hopefully she will continue to improve daily as her stem cells make more white blood cells to heal the mucositis. Her immunity is still extremely compromised, meaning she remains at a high risk for infection.
Emily had a rough morning this morning but got brighter as the day went on. She attempted to eat today but it was painful for her and she only managed a small amount.
Leona
Emily is a little brighter today.
A huge thank you to everyone for the cards, letters, meals, messages, positive thoughts, babysitting etc. Your support makes a real difference to the Wooddin’s.
A special message for Room 7 – “Thank you for your cards, I love the dot to dots and stuff. I thought they were really cute. They made me feel so much better. I can’t wait to see you again. Love from Emily.”
Leona
