2009-09-12

End of Treatment

And now for the post that should have happened last night, the 11th of September, to mark the end of treatment (even though Bianca ended up taking her last chemo tablet on the 10th and the doctor recons we can do a re-enactment of the last chemo tablet with a placebo and take a photo of that).

And even though we are stuck in hospital and our end of treatment plans had to be put on hold, Bianca still added the most important bead of all to her collection, a Purple Heart - this is a very special end-of-treatment bead.


Stringing this bead is serious business:

Reaching the 11th of September is such an incredible and wonderful milestone.

It was 830 days ago that I arrived at the hospital and Terence stopped me before I could enter Bianca's room and he told me that the doctor said Bianca had leukemia. It was 830 days ago that I stood in the corridor, holding Caitlyn in my arms, staring at the wall wishing I would not cry as the tears streamed down my face. It was 830 days ago that I composed myself before I entered Bianca's room and made small-talk about the show she was watching, her room, and trying to keep things normal. It was 830 days ago that our lives changed.

And yes, there are 830 paua shell pieces in this photo to represent every single day from diagnosis to last day of chemo treatment.

During the last 830 days, Bianca collected 1,322 beads. We simply love her courage beads. It is simply the best programme ever and looking at it, it tells a story of courage and bravery and of amazing achievements.

These beads represent the different procedures and treatments that Bianca received since diagnosis. She has a few very special beads for specific achievements and these are not included in our total of 1,322, which are made up as follows:

652 days of chemo (some IV chemo, some chemo tablets, some that are done as sub-cut into her legs, some that have gone into her spine and some that have been injected into her leg muscles).


142 injections, port accesses and finger pricks

47 blood product transfusions (red blood cells, platelets and IVIG)


43 clinic visits


4 nasal gastric tubes. Whilst they were never pleasant to put in (actually it was probably one of the most traumatic things to do), Bianca always recovered pretty quickly and became her smiley self again.


4 times that Bianca lost her hair or that it thinned significantly

20 lumbar punctures (which were done in the operating theatre and under general anaesthetic)


73 different tests such as CT scan, Echo, X-Ray, nose swabs, and so on

117 nights spent in hospital. These were all for various infections Bianca developed during her treatment. This also indicates the number of nights we as a family spent apart where one of us stayed with Bianca in hospital and the other stayed at home with Caitlyn.


112 days where she was neutropenic, had a fever or had to be isolated


1 surgery to insert Bianca's port. This photo was taken the very first time Bianca went into theatre, it was on this day that she got her port and got her very first chemo.


1 port (some kids go through more than 1 port when it stops working or becomes infected, but we were lucky and have managed with only 1 port). Here is a photo to show what it looks like. It sits under the skin, it isn't sore, it doesn't irritate Bianca and before we access it we put Emla cream on to numb the skin.


16 dressing changes

45 days of IV antibiotics (I didn't count this from the start, and I have a feeling we have missed some days)

4 bone marrow aspirates which were done in the operating theatre and under general anaesthetic. Here Bianca is waiting in theatre just before getting her "sleeping medicine".

41 different and unusual things that happened during her chemo treatment including times she was on oxygen

During this time Bianca also had 151 days (302 doses) of steroids which often increased her appetite, made her feel sad or grumpy and made her become all bloaty. It also resulted in a lot of cravings. It is a pity we don't have a bead to represent steroids as it is such a significant aspect of our treatment.

We've had a few challenges throughout our journey, including when they discovered Bianca had kidney stones. It baffled them because you don't often find a 4 year old with kidney stones.

Bianca also developed a bronchospasm that required immediate assistance. Initially she wasn't very responsive, but they sorted it out pretty quickly.

Bianca had an unknown viral infection and ended up in hospital for 34 nights, a lot of that time on oxygen and she was in isolation. To this date we still don't know what the virus was, but we suspect it was whooping cough.


Bianca developed a severe allergic reaction to one of her chemo injections (the Peg shot) which required immediate assistance. As a result, she wasn't able to get this specific drug again, but instead had to get a different version - the Erwinia which resulted in 6 injections, one every second day.

At the start of our maintenance Bianca developed shingles in her face and as a result ended up getting daily Acyclovir tablets since then to try and prevent it from happening again whilst on treatment.

And throughout all of this, the one thing that clearly stood out from all this, is one amazing little girl and her beautiful smile who simply loves life and lives for now.

Bianca, you make us so proud. We've learned so much from you and you are our inspiration and our hero!

13 comments:

Hannah R said...

Lea, you are amazing at putting blog entries together. I'm so sorry Bianca is in hospital at this momentous time. I pray that your stay will be short. You are both inspirational. Take care.

Anonymous said...

What a star!! A huge congratulations from us in completing treatment. Lots of love to you all from Bec, Ali, Hope and Jonas xxx

Suzanne said...

I am so proud of you! And my dear, you are beautiful.

Anonymous said...

Sorry to hear that you are still in hospital. But on the positive side what a huge milestone and a beautiful bead to show the wonder outcome of those 830 days!!! Well done to you all for working as a family though out it all.
Love, hugs and prayers
L, A and T

Sandy said...

Oh my goodness, what an excellent tribute to an amazing and painful journey that you and your family has been on. Great post - I could feel the strength through it.

Annie - Steven's mom said...

Dear Lea

Congratulations on the end of Bianca's treatment..... It is a huge milestone and I am also sorry you did not get to close it off with a photo of that final pill, or the video. Maybe that is the way of life, it leaves things open. Like cancer in your daughter - you will never forget it, it will probably always be a part of all of your lives..... open ended. But ended all the same.

I have been writing to you in my head for a long time now as Bianca's treatment comes to an end. I don't know that I will be able to put into words what I mean without making it sound all about me, but its not - its about you and your family, about your love, determination and strength. It's about your guts and chutzpah, about your laughter and ability to wear the coat of normalcy during years of an upside down life.

Lately I have found myself sobbing when reading your blog..... especially this last one. You write so beautifully, with grace and with love and strength. The photos are incredibly humbling and so often heart wrenching. How can I possibly tell you how much I admire you and your ability, your strength and your love? How can I tell you how deep inside my heart you have crept, right along there with Bianca without ever meeting you. How can I tell you what an impact you have in my life and how small and incapable I feel at times in light of the mountain you have all climbed together, never letting go, never giving up and staying human all along......

Bianca's smile is literally like switching on a light in my days and at times when I have felt wobbly about Steven, I have checked into your blog just to see her smile. I know, I know..... I am an adult, but that little girl really knows how to 'do life' and I am in awe of her as I am of you and Terence too.

Thank you for sharing your lives through your blog - you have enriched and deepened mine beyond words.
love and light
Annie
Steven's mom
http://livingwithcml.blogspot.com

Kristy said...

She is beautiful and are you.

Sharon said...

Bianca, congratulations on this amazing milestone darling! What a big, brave girl you are!! I am so happy that your treatment is over. You and your mommy and family have been a HUGE inspiration to me! Whenever I felt sad or felt tired and like I couldn't carry on you inspired me. On the days when I felt I couldn't take one more injection, one more infusion or one more treatment, I looked to you and how brave you are and you gave me the courage and the strength to keep going.
Keep being the inspiration you are Bianca, I believe there is something great planned for you life,there simply has to be, given your tough beginning.
Lots and lots of love!
Sharon
P.S.Lea, this post made me bawl my eyes out! Kudos to all of you for making it to the end of a very hard journey!!!!

Elana Kahn said...

Just incredible. May she live many, many years and be able to tell her great-grandchildren about her experience.

theclam said...

*sniffle* What a wonderul, inspiring, hope filled, amazing child Bianca is.

Thank the Lord for the last day of treatment!

And hugs to you and Terrence Lea, for your unfailing love which got your precious children through this.

xxx

Tony said...

Thanks for sharing your journey - it really is inspirational & motivating. What an amazing collection of paua & beads, of courage & bravery!

Marcia (123 blog) said...

I am crying reading this post!

What an amazing journey - how on earth did you cope, Lea?

I wonder if I'd cope.

Maria said...

I've just read this summary of what Bianca has endured during her treatment. It's absolutely amazing what she put up with and what you and the family must have gone through during this time. It must have been agonising seeing her suffer through treatments and have a number of medical crises. My dad developed chronic leukaemia in his 50s but it became acute after he developed a fever. It was in 1967 so the treatments were pretty basic and in his case, useless. I guess Lea you would know firsthand what the really important things in life are...