Days just seem to really be dragging this week as Daniel unfortunately went back to treatment doses of his medication from maintenance. This means twice a day treatment rather than once a day and you would think it is no big deal but it has been remarkably exhausting. Daniel has been oddly resistant this or his week and is a bit frustrated with the regimen. I don’t blame him. I have to admit it is getting really old. Between the prehydration and the post hydration and the timing and the pills an hour before eating and the taking out the meds to warm up so many hours ahead of time. Blah blah blah blah blah , I don’t blame him at all. While I try to give him independence and leave him in charge of his own stuff he seems to be regressing and wanting me to take care of it all more and more I was very upset the other day when he impulsively said it was to hard to do it all and that he wanted to go back into the hospital because it is just easier there. I quickly shut that down and informed him that wasn’t happening. We will keep plugging away at the process. Meanwhile we will continue twice a day treatment until we have a negative cmv for two weeks in a row and then consider tapering treatments after that. I think maybe we jumped the gun too early last time. We will see again next week.
On Monday we got some great results that were a preliminary indicator that Daniel may be ready to return to school sooner than later (fingers crossed). His B and T cells are robust and the doctors are very excited about the level they are at. The level indicates that we can low do a lymphocyte test that is very precise and very expensive and so they don’t just do it frequently. This test will take a few weeks to yield results. I will draw his blood tomorrow morning and drop it off on the way to his eye procedure and we will wait. What the results will tell us is if Daniel is ready to start getting his baby shots (in theory). These will be the beginning of his immunizations . Remember he has the immune system essentially of a newborn. Daniel is way behind schedule and should have had these already but the CMV has held him up. What this milestone means to Daniel is it means he will finally get to take off his mask and go back to school. This means everything to Daniel. Never has a teenager wanted to start school like Daniel. He may not admit it, but he wants to more than anything. It will be a modified start to the year at best but technically we didn’t expect him to go back until after November which was a year post transplant date so August/September will be an early gift for us.
I did spend my morning yesterday visiting with some friends as they came to the hospital after I put a call out to please come and donate platelets. I donated and a few troopers signed up to help. The impressive part was all five were first time donators which was very awesome and brave. Two out of 5 couldn’t complete their donations but it was the thought and intentions they came with that counted. It was wonderful to chat with these friends and see them after not seeing most of them in over a year. I was reminded that my friends are still thinking of me and Daniel and following what is happening and are still interested even though I still don’t get out to see anyone very much. I try to remind myself that I used to be quite social and now I don’t really leave the house.
I made a call today to help myself (and my family). As I thought we were this far out and it was going to get easier I realized it has not on many levels. With adding three days a week going to the wellness center for Daniel to recondition and the eye recovery and the hospital appointments and this and that I still haven’t figured out how to efficiently get to the grocery store and cook all the fresh meals that we need. Daniel needs to eat and drink constantly and the amount I need to clean is overwhelming and so time consuming. I am going to try and enlist some help and get some catered meals. We will see if someone can help with meeting Daniel’s food restrictions and our requirements to alleviate some stress and make our life a little easier. Hopefully this will give me a few minutes to I don’t know …do more laundry. No seriously. This may help more effectively put some weight on Daniel nutritionally with a lot less brain damage on my part. Hey it is worth a try.
On Monday we got some great results that were a preliminary indicator that Daniel may be ready to return to school sooner than later (fingers crossed). His B and T cells are robust and the doctors are very excited about the level they are at. The level indicates that we can low do a lymphocyte test that is very precise and very expensive and so they don’t just do it frequently. This test will take a few weeks to yield results. I will draw his blood tomorrow morning and drop it off on the way to his eye procedure and we will wait. What the results will tell us is if Daniel is ready to start getting his baby shots (in theory). These will be the beginning of his immunizations . Remember he has the immune system essentially of a newborn. Daniel is way behind schedule and should have had these already but the CMV has held him up. What this milestone means to Daniel is it means he will finally get to take off his mask and go back to school. This means everything to Daniel. Never has a teenager wanted to start school like Daniel. He may not admit it, but he wants to more than anything. It will be a modified start to the year at best but technically we didn’t expect him to go back until after November which was a year post transplant date so August/September will be an early gift for us.
I did spend my morning yesterday visiting with some friends as they came to the hospital after I put a call out to please come and donate platelets. I donated and a few troopers signed up to help. The impressive part was all five were first time donators which was very awesome and brave. Two out of 5 couldn’t complete their donations but it was the thought and intentions they came with that counted. It was wonderful to chat with these friends and see them after not seeing most of them in over a year. I was reminded that my friends are still thinking of me and Daniel and following what is happening and are still interested even though I still don’t get out to see anyone very much. I try to remind myself that I used to be quite social and now I don’t really leave the house.
I made a call today to help myself (and my family). As I thought we were this far out and it was going to get easier I realized it has not on many levels. With adding three days a week going to the wellness center for Daniel to recondition and the eye recovery and the hospital appointments and this and that I still haven’t figured out how to efficiently get to the grocery store and cook all the fresh meals that we need. Daniel needs to eat and drink constantly and the amount I need to clean is overwhelming and so time consuming. I am going to try and enlist some help and get some catered meals. We will see if someone can help with meeting Daniel’s food restrictions and our requirements to alleviate some stress and make our life a little easier. Hopefully this will give me a few minutes to I don’t know …do more laundry. No seriously. This may help more effectively put some weight on Daniel nutritionally with a lot less brain damage on my part. Hey it is worth a try.