Day 253 – Friday 17 September, 2010
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
Abbey
September 23, 2010 @ 8:32 pm
Dear EMILY
I hope to see you at school soon. Your birthday party was great fun!
Maybe we can catch up in the holidays and watch a movie.
On Sunday we are going to tail some lambs and I’ll get to see Roy the dog, he is really friendly. Wag is really naughty, he doesn’t listen to what John tells him and then make the sheep and lambs go all over the paddock.
The little lambs are cute.
Love
Abbey H
Lea Ribbon (Hatwell)
September 22, 2010 @ 2:45 am
Good luck for the next(hopefully last)round of treatment. Thinking of you all the time. Stay strong little one and hang in there Kath.
Much love xxxxxxxxxxxxxxxxx
KATHY
September 20, 2010 @ 4:15 pm
Emily, Katherine, Gary and family,
What great news amongst the doom and gloom everyone has had with the earthquake.
This sounds very positive for you for a change, and maybe you wont have any “nasties” creeping in.
You are obviously very special for you to be the second only to have this treatment.
Once this busy time has passsed you can go home again, sleep in your very own bed, be with your brothers and sister, and be close to Grandma and Grandad.
We will be very much with you over the coming weeks, Emily, and wishing you only the BEST BIGGEST RAINBOW EVER to shine upon you.
GOOD LUCK and HUGS
The Kesselers XXXX
Deanne Holland
September 19, 2010 @ 7:22 pm
Dear Emily
We send much love and hugs to you all in the next stage of your treatment!
Kath & Gary ~ We have you in our thoughts daily as Emily’s road to recovery continues xxx
Sending all our strength and love to you all
Deanne and the Clan xxxx
Sharlene and Neil
September 19, 2010 @ 6:48 am
Hey there,
Wowweeee what an awesome surprise birthday party, it looks like you had soo much fun Em, and how awesome having your class there. Your cake was gorgeous, love the colours!
It sounds like there is another big road ahead, what fantastic news you have received though…so Em keep kicking that ‘C’ to the kerb and stay strong hun.
If there is anything you all need just sing out, more than happy to help as always.
All our love and positive vibes.
xx
tina
September 19, 2010 @ 1:22 am
Hi Emily + Family
Great to read that the results so far have been a huge success and im crossing my fingers and toes that the next phase will be to. Just hoping that Emily can keep up the great strength and determination that she has shown all through this and will come through it without much pain and side effects, as Emily you so deserve to be without all this. Say “hi” to your grandma and grandpa and hoping all is going well with them.
Love,
Tina X
Trudi Squire
September 18, 2010 @ 6:36 pm
Hi all, fantastic to hear such positive news. All the best for this next important phase. Much love and strength.
Trudi and Craig Squire
Helen, Zdenka, Irene
September 17, 2010 @ 3:58 pm
hi Emily, it looks like your birthday party was lots of fun and excitement. We are sending you belated birthday wishes. It is wonderful to hear the good news about your progress and we are sending lots of love as you move onto the next round of treatment next week. Our thoughts are with you all. Helen, Zdenka and Irene.