Gorrito de Fresa

En el jardín

2 July update

2 July 2009

We have just heard that ALL the margins of the tumour removed in surgery as well as ALL the biopsies taken from other areas are 100% CLEAR of cancerous cells!!! This is fantastic fantastic news!

Luna will still undergo a further five treatments of chemotherapy, but really as a precautionary measure. This should finish early October, with her Hickman line (main access line to the heart for giving drugs) most likely removed one month later. That leaves us a couple of weeks to prepare a massive celebration for her 2nd birthday on November 19th.

With much love

Monica, David, Luna & Leo

23 June

23 June 2009

Dear all

Luna had 'major surgery' this afternoon to remove the remains of her tumour.

As expected, the surgeons removed part of her bladder (about 20%), but they also elected to remove her urethra. Whilst we knew there was always a risk that this could happen, we thought it was very low after the recent surgical investigation and biopsy results. However, when they opened up her bladder today they saw that the urethra was very inflamed and had been pulled back into the bladder as the tumour had shrunk with the chemotherapy (suggesting that the tumour did indeed extend into the urethra). Although the surgeons could not be sure that the urethra was affected, they did not want to take the risk and elected to remove it.

It is impossible to reconstruct a urethra, so Luna will be in nappies for the next three years with no control over her bladder. After this period, once the doctors are certain that Luna is clear of any cancer, the surgeons will reconstruct her bladder and insert an access point below her bikini line for her to insert a small tube when she feels the need to empty her bladder. It sounds complicated, but we understand that it is not and is infact fairly common. She will of course then have control over her bladder.

The vagina wall also appeared very inflamed today, but the surgeons are more confident that this is purely inflammation and not cancerous. In any case, they have taken more biopsies and we will have to wait for the results (expected in under a week) before knowing for sure. If this area also turns out to be affected, then we would have to consider further surgery or possibly radiotherapy. We really hope that this will not be necessary as it would very likely have serious side effects.

Not really a very easy day for any of us, but given where we started from in March we still think she is doing extremely well.

Luna is likely to be in hospital for one to two weeks, but is already smiling.

Chemotherapy will then re-start in a couple of weeks for another five sessions.

Monica, David, Luna & Leo

Me llamo Luna

20 May Update

20 May 2009

Dear family and friends

Yesterday, Luna had investigative surgery - a video camera up her urethra into the bladder and biopsies taken around any area close to the tumour that could have been affected.

We now know that the tumour is about the size of a small plum (less than 5% by volume of the original size), and some of the remaining cells are either dying or dead. We also know that the stem of the tumour is attached to about one quarter of the bladder wall, just to the side of the urethra. The surgeons are very hopeful therefore that Luna can be left with enough of a bladder for it to remain functional (albeit she will probably need to go to the toilet more often than a 'normal' person), and that her urethra should be safe from surgery.

For us, and the surgical team, this is the best possible outcome! We had been very concerned that they would have to remove her urethra (as the tumour is so close) and possibly part of her vagina wall. We had also been extremely concerned about the need for radiotherapy (with serious long term side effects) post surgery. Whilst the exact procedure will not be confirmed until we have the results of the biopsies and, even then, not until they actually open her up to do the surgery, we are extremely happy with the outcome of yesterday.

For the first time, we saw the doctors smile and finally got them to admit that Luna's prognosis was now greatly improved (we have believed that for a long time - ever since she pro-lapsed so much of her tumour).

The main surgery is now scheduled for June 23rd.

We still have a long and hard road ahead. Luna is back in hospital on Friday for her next round of chemo. The effects of chemo are cumulative, so even though she did so well after her first two rounds of chemo, she is taking longer to recover now. We will continue to go into hospital between chemo sessions, as she gets temperature spikes (suspected infections) that have to be treated. We will continue to struggle to feed her and rely on feeding through a nasogastric tube / pump. And even after the chemo is finished (towards the end of the year), we will have to go into hospital for repeat investigative surgery every three months to monitor the affected site. All of this is very challenging and tiring. However, the difference now is that we feel we have a goal that together we can attain.

Thank you everyone for all your support. We have appreciated it immensely. It has kept us going.

With much love Monica, David, Luna ('our little warrior') and Leo (our attention-lacking dog)