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