Well let me start by saying that today was a good day. It started out challenging as Aly was unable to eat this morning as she was being sedated so they could perform an MRI and another ultrasound. The ultrasound that was performed the other day was not really clear, and although it showed a blood clot it was not clear how bad it was. Under sedation Aly wasb totally still and they were able to get the best shots possible. The whole process took about 3 hours to complete the MRI ( it was delayed as she had a full bladder, and they needed to wait for her to pee) and the ultrasound. I took the opportunity to eat some lunch, go for a another nice stroll along the waterfront, and just relax a little on my own. We have only received the results from the second ultrasound and we were relieved to hear that there was no blood clot. Now its hard to say if perhaps there never was one, or if the few doses of blood thinner helped alleviate the problem - but regardless I am thrilled. Having a blood clot as an oncology patient can be very challenging as there are many times where she would have to undergo procedures like the spinal tap and they would need to be very cautious of her bleeding too much etc..... I feel slightly more relieved about it all now, than I did yesterday when we heard she was in remission.
We initially thought Aly was considered as Low Risk ALL and was able to participate in a new study where she could potentially receive safer drugs with lower risk of long term side effects. Unfortunately the Dr pulled us aside today and told us that some other blood work had impacted those results and she is now considered Average Risk ALL. All this means is that she will undergo standard treatment and does not qualify for the new tests. The survival rates for this is still 95%, and the treatments seem to be pretty standard. Once we meet with the Dr tomorrow, I will have a better idea of what the next steps are.
Each day I see more and more of my little Aly coming back.......today was no exception. She laughed alot, played around with nurses and visitors and we have started a reward/sticker program for her that seems to be working. Every time she is nice to the nurses when they do her vitals she gets a sticker - -after she gets 4 stickers, she gets a little surprise. I just think it's funny that I have to create a reward program for her to be nice - - perhaps someone should have done that to me years ago, might have saved some people some grief. I still have no idea when we will be discharged, I think now it all depends on the results of the MRI. If it shows that she has a bone infection, then we are here for another 6 weeks. It might sound like horrible news, but I get a weird sense of comfort here. If she gets a fever, we can do blood cultures immediately. Her vitals are taken on a regular basis ..... all these things make me comforted knowing that she is in good hands. If being admitted to KGH is what is best for Aly - then it is what is best for me. I cannot say enough about the nurses here ..... some have their moments, but then there are some that just SHINE SHINE SHINE. They blow me away, how much they care about Aly. One in particular tells me how she thinks about Aly all the time. When she is not working, she worries about who is looking after her and if they are doing what they should be doing. Aly wasn't even her patient today, yet she was the one that took 3 hours out of her day to stay next to my little girls bed to make sure she was ok through the MRI and ultrasound. She even told me that she looks forward to coming into work so she can have Aly kick her out of her room - - ha!
This whole experience has put life into perspective for me. I no longer care about wanting a fancy car, living in a big house or wearing $150 tops. Life is too short and too important to spend trying to please others who really don't give a shit about you anyway. Those that are important are the ones that are there for you in the hard times even more so than the good times. I think that being surrounded by the great family and friends is what has helped us get through this and that is totally priceless.
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