One year

Its been a year today since we lost Shanean.  The intensity and frantic pace of looking after someone when they were so sick instantly goes away and then there is little left to do but shake your head and wonder how this could have happened. 

The kids are doing fine - from a practical perspective anyway - but no matter how much you are told of children's resilience and that "they will be fine" - they lost their mother and that will be something that is missing for the rest of their lives.  Shanean spoke of the "label" that they will wear forever and I now know what she meant.  Celeste still cries for her mummy to this day and Joel still asks to go to the hospital to visit mummy, but the frequency and intensity is less so as it becomes part of their life and who they are

Celeste started school this year, Joel is finally out of nappies (but still doesnt eat anything), they are learning to swim and Celeste has broken all the rules of the Salter genetic code and come second place at her school athletics carnival.  The little things where you dont feel sorry for yourself for their mummy not being here - you just feel sorry for mummy for not being there

The sad, traumatic memories eventually give way to happy memories and routine kicks in and life goes on.  The panic of the thought of raising a teenage girl as a single daddy and wondering if the kids will run off the rails gives way to learning how to braid hair, ironing school uniforms and going to mothers day morning teas at school. 

At the end of the day, these anniversaries are just another day.  The one year today is the same as her birthday, the kids birthdays, my birthday, mothers day, fathers day and every other day.  We miss Shanean every day, we miss mummy every day and so do all the friends and family around the world.  There has to soon be a connection made by science to discover why is it all the beautiful, strong, caring, brave, considerate, positive, calm and just lovely people have to die so young

So on this day, as me and the kids sit in Shanean's house where she grew up in South Africa, awake since 4.00am from jetlag surrounded by her family that are the reason why she was the person she was, we will raise a beer, apple juice and bottle and toast our mummy. 

And knowing this household there will be muuuch more than one toast to mummy today

Nee, I am just trying to make you proud everyday, I will only do half as good a job as you, but its a million times better than I would have been able to do without your mentoring.  So thankyou

Zanzibar

Next sunday the 2nd of october will be an evening in honour of shanean at the zanzibar hotel in newtown, sydney (king street). From 300pm

Its not a funeral or memorial service but a gathering for all those who loved her to reminice, drink, dance and talk of good times we shared with her

Kids are welcome, no rsvp required - just see you there if you are there

Thanks
Shayne

Love you forever Nee

Today at 2.00pm Shanean left us, no more pain, medicine, hospitals.

As she asked she was in her bed, surrounded by her loved ones, the loved ones that were fortunate and priveledged enough to be there with her.

Her strength, bravery, courage and pragmatism cannot be expressed in words. She chose her time, everything was in order. Now her spirit is free.

I cannot thank enough the support, well wishes and encouragement from the countless people who had the fortune in life to be touched by her, you all know just how unique and special she was.

Nee from me, all I can say is thankyou for everything and I love you.

Its been five weeks since we got the awful news about shanean. Since then shanean has had some great times - at some times feeling better and than the whole last 2 years and included a visit from all her family from south africa

Part of the weekly routine she was on included daily radiation therapy for 2 weeks and a weekly checkup at the hospital

Yesterday we went to the hospital for this weeks checkup'. For the 2 days prior Shanean was very tired and ended up sleeping around 20 hours per day

The news they gave us wasnt pleasant - the sleepiness is being caused by the disease moving into her blood and there is little more they can do - she doesnt have to go back to the hospital and most of her medications have stopped

Now its quiet home time with shanean her mum, sister, myself and the kids. Shanean has asked that the house remains calm with just us for now. Whilst this means no more visitors or phone calls, if you would like to send Shanean a message you can do so on the blog or email or sms. She may not reply but she will get it even if we read it out to her

Thanks again to everyone

Home Time

We got Shanean home from the hospital at around 5.00pm on Friday. She has a bag attached to her with constant morphine going in to her to ease the pain, she also has backup supply to add manually should it get a bit too much

On the way out we said goodbye to the nurses who all know her so well over the last 2 years, a few tears from some of them - proves that Shanean tends to steal the hearts of most people she meets

The palliative care nurses come to our house each day to check up on her and sort out her pain relief. She can stay put at home until the radiation on Tuesday

Yesterday we had a bbq and danced with the kids (lots of cuddles for them at the moment), read them a story for bed - just a normal day

Im glad this blog has been useful for so many, it has been very therapuetic for me as well so its a bit of a win-win. I wish i could sign off with good news for all. This is an awful disease, but Shanean knows she has the collective love, support and well wishes of her family, friends, me and, of course, Celeste and Joel

She is very active online - is all set up in bed with a laptop and internet. If you send her a note she will get it

This photo was taken a couple of weeks before she was diagnosed. The look of absolute love she gives to the kids in it is forever and this is my favourite photo

10 years

Yesterday was mine and shanean's 10 year wedding anniversary. Happy anniverary nee. I love you

Yesterday Shanean went for a scan. About a week ago she had a niggling pain and by yesterday it had deteriorated to the point of needing morphine pain relief. The professor then quickly arranged for a scan

This is what we were told -

The cancer is still growing rapidly and aggressively. The professor says he has never seen anything quite like it and that from an aim to cure perspective, there are now no more treatment options left. She has been transferred to palliative care where the goal is to treat her terrible pain and make her comfortable. She has some radiation scheduled next week to try and reduce the tumours - it is just for an hour each morning and she wont have to be admitted

She had to stay in hospital last night so they could work out her pain treatment regimen, but we are aiming to bring her home today where she can be with the kids

so far

2 weeks out of hospital today (and one month after transplant) - after being very sick for the first couple of days Shanean came good. She was up and about nearly to normal, still gets tired and weak but is eating well and enjoying time with the kids. Today we went to the park and then to the pub for lunch. She has cravings for sushi, fruit salad and grapefruit juice - shame about the grapefruit juice as she is prohibited from having this due to some sort of reaction with the drugs she is taking
She goes for checkups at the hospital every Thursday, they are very pleased with her progress so far - no signs of GVHD yet and all the blood counts and functions are normal
It will just be a monitoring process now for the forseeable future - there is no more treatment pending, she just has to take her many pills each day - steriods and immunosupressants amongst others.
They havent mentioned when the next scan is, and we are not that keen to ask - trying to enjoy a little bit of normality whilst we can. We may get more info at the next checkup on Thursday

around

Shanean went for the first check up today at the hospital haematology outpatients unit, all things are going well, white counts are still through the roof (circa 30 vs normal of 5). The Prof said that basically engraftment is over and is "no longer a blood thing". So she will be just under close observation from now on

She is feeling a lot better now, the nausea has subsided and she is eating a bit. They gave her some IV fluids today which probably helped as well, so all things going well if this level of recovery improves she should be feeling somewhat human again in no time

parole

on Monday night Shanean was released from hospital - her white cell count was 30 (normal is 5) so she well and truly has enough of these and as she had no infection or other complications they sent her home.

She has to go in regularly for check ups - first one tomorrow, to check on all sorts of things plus GVHD. She will be on immuno-surpressant drugs for the next 6 to 9 months. Lymphoma is a side effect of these drugs as per the information booklet(amongst other things)

She is still quite ill, has bad nausea, probably a side effect from one of the myriad of pills she is taking, but rather recover at home than in hospital. She got kicked out of her private room for the last 2 days so all the more incentive to come home.

Today shanean's white cell counts are at 2.8 so things are definitely on the up - the doctors seem even a little surprised at how well things have gone - christene's cells seem to be doing the trick. She feels much better - sores going away and is able to eat again (and beat me at scrabble but I let her do that)
Tomorrow she will come off the iv immunity suppressants and go on to oral tablets and if things go well she should be looking at going home towards the end of next week which will be exactly a month in hospital for this cycle

From now on the risk of graft vs host disease kicks in. Around half of transplant patients will get this disease and around 1 in 5 will die from it. It is the donors cells attacking Shanean as foreign. If she gets it the main question will be how severe it is - too much is life threatening but too little means the tumors have a higher chance of growing back. Therefore there is a middle ground where we would like Shanean to get a mild dose of it, as the donor cells then actually attack the cancer as well (graft vs tumor effect). A fine line to be walking

Up

Shanean's/christene's cells are coming back now. Today her counts were 0.6 which is considered the beginning of engraftment. As the cells increase so too should Shanean - her mouth and throat are still sore although seem to have stabilized and not got any worse
Everything should come back to normal and she will be let home when she is "unsupported" meaning no more transfusions or cell booster injections

Once she is at home she will still be at the hospital quite a bit for regular checkups and possible further treatment - probably every week to start with decreasing to every 2 weeks over time. They will check that all her counts are ok and keep a close eye out for any early warning signs of graft vs host disease

Scrabble

Day 11 today and Shanean is actually doing a bit better than a few days ago. Her mucasitis isn't as sore (although sore enough to be on high dose morphine - it's all relative) and she has been able to sleep the days and nights away. We have just finished a game of scrabble (I won - no favors regardless of health issues) and she is sitting up watching tv

They have stopped giving her methotrexate (the stuff causing the sores) due to her sores being too severe and she has just finished a platelet transfusion and is about to get some iv antibiotics - although her flu is gone and she has no fever or obvious sign of infection

Day 8

Today Shanean is quite sore due to the mouth sores - her mouth is not too bad due probably due to the trial drugs she was given - but her throat and ears that are causing the most trouble
She is now on morphine for the pain and had two blood transfusions yesterday, once the morphine kicks in she is able to get some food down and hold a conversation which is good
Given this the staff are very happy with her progress - she is a textbook transplant case apparently and is also apparently lucky as she only has mouth sores as a side effect. Stomach problems are also very common with transplants and she hasn't got any of this

Still doesnt make her mouth sores any less painful though. More than halfway now - should expect engraftment this time next week or a bit earlier hopefully

Rhino

Day 7 since the transplant and Shanean is well and truly at rock bottom from a cell count perspective - she has had platelet and blood transfusions to support her and she has also picked up an infection - a strain of rhinovirus is the diagnosis - which is the cause of the common cold
The mouth sores are back but she is still able to eat which is much better than last time (so far)
Overall its so far so good and everything is as to be expected - the doctors have asked that she get no visitors until the infection goes away but this is probably more directed at the kids as her mum and sister were allowed in yesterday
Another week to go before christenes cells can be expected to engraft and then we can think about maybe coming home

Bag Lady

In the few days since the transplant Shanean has hit bottom. All the counts seem to be zero and she has picked up a bit of an infection due to no immunity. This is when she feels like crap and the waiting game begins to start coming up again (not for a few weeks though)

To make sure she is OK she is beginning to get a lot of IV treatment

3 x Anti-biotics per day for 2 hours
1 x Other type of antibiotics per day for 4 hours
2 x Anti-rejection drugs per day for 2 hours
Blood/Platellete transfusions on demand. She had her first blood transfusion yesterday

Due to the fact that there are not enough hours in the day for all this stuff to go into her she has a couple of lines going at once which is a bit constricting and a nuisance

So far the good news is that trial drug to stop the mouth sores seems to be working. She can feel tingling and mild soreness in her mouth, but she hasnt got any specific sores yet. Everday that these things dont happen will be a bonus as she will be able to continue eating and drinking and keeping some strength up

Also today she is getting her brain scanned to ensure she has no bleeding on the brain due to the lack of platelletes. This is because she has a bit of a headache - they dont really think this is happening but seem to take no chances

transplanted

Yesterday was shaneans bone marrow transplant - christene's cells were harvested the day before and they got more than enough which was good so the next day they were put into shanean

As the nurses say it is a bit anticlimatic as once thge cells are out its basically an iv drip with what looks like blood going in to her and its all done in her room - a big change from the old days where they sucked it out of the bones ind injected it back in

She is in isolation now in her own room which is great as she has had some nightmare roommates in the shared ward. She has a fairly big room with her own fridge, microwave and ensuite and most of all privacy - some photos on the wall and an ipod dock for music will make all the difference

So now the waiting game begins - she is on all sorts of anti-rejection drugs (some of which are mild doses of chemo that supress the immune system - her white cells haven't dropped yet so that will be a few days away

She has picked up a bit of a tan from the radiation and her mum and christene did sneak her out to the cafe next door today - but home is definately where she would rather be

radioactive

The last 2 days has been radiation treatment for shanean.
She goes through an underground passageway to the radiotherapy building - once there they tape receptor things all over her which measure the dosage she gets. She then lies in a perspex box with her knees bent. They put rice bags on her shoulders so that she is an even square shape so that the radiation works evenly - then she will be left alone in the room whilst they blast her for 20mins

She gets this at 900am and 300pm although todays afternoon session was delayed and she had to wait around until 500pm

All this is destroying her bone marrow so her bone marrow transplant is this thursday. Christene goes in tomorrow at 830am to be "harvested" - she will have a few more tests in the morning then the extraction should take about three hours

Hopefully shanean should move to her own room tomorrow as she needs to be isolated whilst her immunity is gone. This will be a lot more comfortable for her and will also make it easier for the kids to visit her (so long as they are healthy)

happy bday daddy :-)

so this is not technically allowed - me blogging touchy feely things on shayne's blog - but i figure i might not get into too much trouble..

just wanted to wish shayne (daddy) a very happy 38th birthday for today.

and also take the opportunity to publicly thank him for everything he's done to keep this family boat afloat over the last nearly two years. he is a wonderful husband, father and family man and we are all very lucky to have him.

happy birthday, we love you xoxoxo

trials and radiation (tour)

Shanean woke up this morning with hardly any pain from her tumours due to steroids she has been receiving and has needed no pain relief today which has made her feel a lot better

Yesterday when she was in theatre getting her line in a nurse burst in demanding that she take a tablet straight away - Shanean was still a bit groggy and took the pill without fully grasping what the explanation of it was. Turns out it is a brand new drug under trial which prevents mucusitis (the mouth sores) - the staff were very exited given it was so new as most hadnt seen it before. It is a cell growth accellerator that thickens the skin in the mouth. They were keen for it to be given at the right time so its effective as Prof Joshua claims it costs about "$50 million a pill"

Due to her being on this drug, they have cancelled her lumbar punched scheduled for today (v pleased about this) and it will postpone chemo a day - a cell accellerator does the opposite of what chemo does. The start date for chemo is now Saturday

Today she was also taken on a tour of the radiation department. This is a building away from the hospital in the next block but is connected via a long underground passage. They showed her around and explained what will happen. Basically she will be put into a box with her legs curled up and they put 2 rice filled bags on her shoulders and then zap her with radiation for 20 mins twice a day for three days starting Monday

waiting

Today shanean got a line inserted into her chest so they can start administering all the drugs. These lines normally go into the neck with all the tubes hanging out - but she asked for it to go into her upper chest to keep it out of sight and away from the kids which they did for her

She saw the professor today and he will put her on steroids to start reducing the tumours to give her some relief - the side effects of these may be "psychotic episodes" which should make the next visit interesting