I know medical updates have been spotty lately but you tend to get - TopicsExpress



          

I know medical updates have been spotty lately but you tend to get into a mindset of what is normal and acceptable so its sometimes hard to update. Some ups and downs with kidney and other levels, he doesnt eat much so hes losing weight, some other random things and he sleeps a lot; even so, his overall counts are ok and hes managing outpatient with no IV meds (just a two hour infusion at clinic once a week and 35 pills a day, easy peasy to him lol). In the transplant world, thats not too shabby. Weve been getting weekend passes to go home to Virginia and return to Duke each Monday through Thursday. The passes are exhausting for him since its a lot more activity than he is used to but its nice to be in our home a little bit. Driving back and forth so much is tough on both of us for different reasons but considering the amount of isolation hes had since cancer #3 hit at the end of May, its worth it to get him active. If things are steady, well be heading home to stay very soon but I have learned it isnt even safe to type out the expected date; thats asking for trouble lol. If we can get home without more complications from the actual transplant, hell have isolation from school, kids, going places, etc through the spring/summer which is really tough but is necessary and well get through it. As far as cancer goes, the transplant was geared to replace the cells his body makes with ones thatll hopefully fight off the cancer just like the last transplant. It will be a year before we say cancer-free but often, if the cancer takes over again, it happens faster than it did the last time (cancer #2 happened at one year, cancer #3 happened around 5.5 months after treatment stopped). So our next little milestone will be getting beyond the 6 month mark without seeing cancer; well do a tiny cheer (tiny because its just common for it to happen sooner than before and we fall outside the common category often lol). Then at a year, the cheers will be ridiculously loud! He still has a very long road ahead and transplant problems can pop even at the one year mark, very unpredictable. I figured Id get the what next details out there because Im hoping the next update will be us going home and I want that post to be nothing but excitement. Ill close with smiles: his teacher comes to RMH a few days a week and recently we had a beautiful day so this is them doing school in the courtyard :) He cant go anywhere or be around kids but we take every opportunity to change the scenery.
Posted on: Wed, 05 Nov 2014 20:35:27 +0000

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