Last week has been quite a week for us. Just when you think what can be worse... you end up finding that the bets are higher on everything.
This journey has taught us one thing for sure... do not take anything for granted.
On Friday, Amaey and I went in the hospital at 6:30am for his MRI, CT scan, and x-rays. They wanted the results back before our BMT meeting at 1:15. They also decided to start Amaey on a consolidation chemo to bridge the gap from now until his transplant, so after all the scans we went to the clinic for the chemo. At 12:15 I dropped Amaey home and then Apurva and I left for the hospital for our BMT consent meeting.
Yesterday Sheila had stopped by and while talking with her I realized that we need to be grateful for the fact that one of us could be a potential donor for Amaey. But it is really hard for us to think that way. When you sit through those BMT meetings you come out of there not knowing which way to turn. Our last meeting was a consent meeting, in this meeting they went over all the results for the tests Amaey has been through, they found an infection in his sinus and an infection brewing in his lungs. They started him on antibiotics for both. They will need to repeat his CTscan next Thursday to see if the infection is growing or contained.
He is also allergic to one of the antibiotics he has been getting, Vancomycin. He gets Benadryl with it however we noticed that he had some spots showing up on his body while he was getting vanco at home. We have been watching those spots for a week and on Friday the doctors asked for the dermatologist to see Amaey, while we were at the BMT consult meeting Aditi brought Amaey and Arjun to dermatology. The derms decided to do a biopsy on two of his spots so Apurva left the meeting as soon as it ended and ran over to Amaey across from the hospital. I stayed behind to wrap-up the meeting and sign some research papers. Amaey's oncology doctor stopped by an hour later to see if we were still in the consultation room and I was, I asked him why he decided on the biopsy and he said he is worried that leukemic cells could be showing up in his skin.... WHAT? You really got to be kidding right? If there is no cancer showing in his MRD and he is considered in remission how can there still be leukemic cells?
I just looked at him and said, what if... well we would need to meet and rethink the next steps if that were the case. The biopsy results will be back on Thursday so we will know more then.
I decided to not give it too much thought, take it in our stride and move on with the one day at a time mantra we have been following. Bring it on... seriously, just bring it all on now, so that if and when the BMT happens we will hopefully have thought of everything and will know what to expect in terms of recurrence. We might be living in sunny California but on our house the weather changes every few hours, never know when the calm changes into a storm or a scary tsunami.
This journey has taught us one thing for sure... do not take anything for granted.
On Friday, Amaey and I went in the hospital at 6:30am for his MRI, CT scan, and x-rays. They wanted the results back before our BMT meeting at 1:15. They also decided to start Amaey on a consolidation chemo to bridge the gap from now until his transplant, so after all the scans we went to the clinic for the chemo. At 12:15 I dropped Amaey home and then Apurva and I left for the hospital for our BMT consent meeting.
Yesterday Sheila had stopped by and while talking with her I realized that we need to be grateful for the fact that one of us could be a potential donor for Amaey. But it is really hard for us to think that way. When you sit through those BMT meetings you come out of there not knowing which way to turn. Our last meeting was a consent meeting, in this meeting they went over all the results for the tests Amaey has been through, they found an infection in his sinus and an infection brewing in his lungs. They started him on antibiotics for both. They will need to repeat his CTscan next Thursday to see if the infection is growing or contained.
He is also allergic to one of the antibiotics he has been getting, Vancomycin. He gets Benadryl with it however we noticed that he had some spots showing up on his body while he was getting vanco at home. We have been watching those spots for a week and on Friday the doctors asked for the dermatologist to see Amaey, while we were at the BMT consult meeting Aditi brought Amaey and Arjun to dermatology. The derms decided to do a biopsy on two of his spots so Apurva left the meeting as soon as it ended and ran over to Amaey across from the hospital. I stayed behind to wrap-up the meeting and sign some research papers. Amaey's oncology doctor stopped by an hour later to see if we were still in the consultation room and I was, I asked him why he decided on the biopsy and he said he is worried that leukemic cells could be showing up in his skin.... WHAT? You really got to be kidding right? If there is no cancer showing in his MRD and he is considered in remission how can there still be leukemic cells?
I just looked at him and said, what if... well we would need to meet and rethink the next steps if that were the case. The biopsy results will be back on Thursday so we will know more then.
I decided to not give it too much thought, take it in our stride and move on with the one day at a time mantra we have been following. Bring it on... seriously, just bring it all on now, so that if and when the BMT happens we will hopefully have thought of everything and will know what to expect in terms of recurrence. We might be living in sunny California but on our house the weather changes every few hours, never know when the calm changes into a storm or a scary tsunami.
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