Suzanne,
so sorry for the actually sad situation. I would like to help you if i could in trying to manage the actual situation and to improve the mood of your mother, which seems to be in a desperate status now.
In my past i had a lot of experiences with emergency situations, first time with my own psychiatric disease, then also with the problems of the members of my self-help network, und now as a inpatient in hematological wards for 15 months.
Strategy matters (that would be my approach, please stop to read this if it is not convenient or even hurting for you):
Your own perspective in relation to your mothers disease:
In such a situation it seems difficult to reflect about the future - e.g. a transplantation. and this all might seem to be an "uphill battle" without hope.
A step-by-step strategy could perhaps help?
For today: Is there a possibility to contact the hospital or your hematologist (at least by telephone) today and ask a doctor for more informatione? There must always be a doctor present in the hospital, although there are less patients and less doctors during the holidays. Supposedly these questions have been already checked before.
These questions could be:
- Could resp. should anything be done against the vaginal bleeding to emprove this symptome today?
As your mother does actually not produce platelets such a bleeding could be perhaps threatening (but i have no personal experience with low platelets and bleeding). I had much bleeding in a time-period where i had myomas in my uterus 1997/1998. The gynocologist prescribed Cyclocaprone, which reduced the bleedings considerable. This was no solution of the underlying problem, but perhaps it would considered as potentially useful by the hospital doctor, so you could get the medicament even earlier as Monday? I suppose this bleeding is not estimated as dangerous by the doctors, because otherwise they would have taken action..(?) But a telephone call to the hospital could make you sure that there is no actual danger with that bleeding and this could help to make christmas not so much desperate..
- Is there an actual need for your mother to get transfusions? If yes, every day counts, and also your initiative counts..
For the hospital beginning from Monday:
- You wrote that it is planned to make a try with Clofarabine. This seems really to be a medicament of hope actually in the hematological research. Look, there is a report from the this year Conference of the American Society of Hematology! There is a study running with oral Clofarabine for patients in the age of your mother, which have not responded in den past to demethylating agents like Vidaza! From this study they report a response rate of 31 %. This is not so bad for patients in the situation of non-respondance. Doctors look much to find any helping medicaments for this situation. There are patients involved in the study with MDS or AML after MDS/sAML, your mothers diagnosis.
http://ash.confex.com/ash/2010/webpr...aper31855.html
- For Austrian Hospitals - and I am sure also for such in the US - i am sure, that your mother will get all the supportive care that she needs,which includes
-- management of the vaginal bleeding by sending her in the hospital (perhaps in her patient - bed) to a gynäecological ward to investigate the source of bleeding and give her supportive medicaments
--giving her the necessary red cell and platelet transfusions until a response to clofarabine is obtained. This could happen early in the treatment, as in the study report described. If this medicament would not work, - i guess they will have another one to attempt with..
- Clofarabine seems to be a mild medicament, it has been used primarily für children and young people with relapsed or refractory CLL, but now it has been discovered as a treating choice also for some refractory elderly patients with MDs/AML. In hospital your mother will get perhaps the intravenous infusions.The abovementioned study uses oral Clofarabine, with could be administered by your mother also at home, if it works. But there are also a lot of possible side effects your mother will have to cope with.
There is a full information concerning all this /the medicament Clofarabine/Clolar.
http://www.rxlist.com/clolar-drug.htm#moreinfo
Perhaps you want to discuss one of the points/information with a doctor.
Please don`t be shocked, this is not necessary, - the most side effects will never come!
In case of side effects experienced by your mother (and i don`t mean hematological ones) it is usually helpfull to communicate them as fast as possible to the medicians and nurses, and as the visiting daughter of your hospitalized mother you have a powerful word in this situation, you could help your mother express her side effects. In my experience there exist in almost all cases extra medicaments to moderate this side effect, -but it is often necessary to claim that. The personal in a ward is often in hurry and also occupied by other patients so that they could probably forget to look for your mothers complaints..if they are not reminded to do that.
For the Future: There is a study with Clofarabine where the remissions lasted for median 12 months. This is not long compared with a long life,but it gives time for the different treatment choices, such as SZT. I know the perspectives are in percentual estimation not so good for your mother, but there is reason for moderate hope.
Your mothers perspective/situation.
Seemingly your mother must have much experiences with hematological hospitals, treatments, side effects.. and such persons usually have developped their own helping/self-helping strategies. Maybe it consoldates your mother, when you ask her for her specific methods which helped her in the past to cope with the desasters, the hospitalisation, the therapy-failings.. Maybe she will express some ideas e.g. what to take with her to the hospital on Monday.
Christmas in the family could be a consolidating event. Perhaps you want to make many many photographs of your mother with her beloved ones? Printing them out, wiriting love messages on them.. Celebrating a spot of healing new life (Christmas) in a difficult time. Taking them to the hospital could give your mother pehaps more hope and power, and she has also media to have conversation with the nurses in showing them the photos.
so, hope i could help a little. Nice regards to your mother!
Happy Christmas!
Kind regards,
Margarete