Hi everyone, Had a brief meeting again with the Oncologist and care team to discuss Emily, who is doing amazingly well at this stage I might add : ). We discussed the pros and cons of doing the urine test to check for disease progression and have decided that for now ignorance is bliss, and rather than […]
Hi everyone, Had the meeting with the palliative care nursing team last week which was very difficult but the staff are just amazing and I have so much trust in them. It has been decided that in order to check disease progression we will just provide a sample of Emily’s urine. Neuroblastoma tumors excrete a […]
We have a meeting with the palliative care team tomorrow. I will be asking about the side effects of the potential low-dose chemo to help in our decision making down the track. I don’t want her to lose her hair or her appetite, been there done that – if it is not going to change […]
Emily is doing well at the moment. The focus now is on the things we CAN control, those things being fun experiences for Em and creating memories for our family and friends. Gary and I will be meeting with the palliative nursing care team on the 3rd of May to discuss pain relief options etc […]
Emily is recovering from the side effects of the radiation and now it is just a case of watching and waiting to see what symptoms crop up next in terms of tumour activity within her body. We have decided not to have Emily’s jaw scanned as it is just taking another day away from her […]
Emily had her last session of radiation today (round 12). We celebrated by having an ice cream party! Who knows what’s next…… Here is a picture of Jack helping to put on the mask. The blisters in her mouth will take about ten to fourteen days to heal. When we know the next step we […]
Today Emily attended a scan of a different nature (my 12 week pregnancy scan) and there’s only one baby. Jack was certain it was twins – Emily thought triplets! Needless to say they had us a little worried. We are all very excited, it’s great to have something positive to look forward to. Emily is […]
Hi everyone. Emily is now up to round 9 of 12 radiation sessions. Originally it was just going to be 10 rounds but because she has coped so well they are doing another two to try and deal with the jaw tumor as best they can. The last couple of days the side effects have […]
Yesterday Emily had a CT scan of her chest, abdomen and pelvis. Results showed no evidence of disease in these areas of her body. Whilst this is good, unfortunately this doesn’t change the prognosis but hopefully means it gives Emily more time to live life to the full (and maybe a miracle cure in the […]
Hi everyone, I have had a lot of people ask about Emily’s treatment options for the recurrence of the Neuroblastoma to Emily’s jaw. As we all know, unfortunately there are no curative options, given than Emily has had the MAXIMUM amount of everything possible to try and cure this hideous disease. I would like to […]
Today Emily had her first round of radiation to her jaw which she tolerated very well. The effects will be cumulative so hopefully the side effects will stay away for at least a week. It breaks our hearts to see her with the mold over her face (see pictures), and so vulnerable around all the radiation […]
Hi everyone, Today Emily spent 5 hours in the hospital for radiation planning. This involved molding a mask to her face to use during radiation. The staff melted some plastic mesh type stuff and put it over her face then cooled it down for ten minutes with ice packs until the mold set. It looked claustrophobic but Em […]
Hi Everyone, Thanks to you all for the overwhelming support we have had already. Such a difficult time and your thoughts and messages help so much. Just a quick update because I want to make it really clear that at this stage of Emily’s journey she is COMPLETELY NORMAL, has energy, and is her usual […]
Devastating news today. For the last week Emily has had jaw pain and a numb chin and bottom lip. Today an MRI revealed a large neuroblastoma tumor in the right side of her jaw. There are no curative options for Emily. Treatment options are aimed at controlling symptoms and managing her pain rather than curing […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]