Matthew came home from a big morning appointment getting his braces off and all I can say is WOW! That is a milestone in itself. He is so grown up and handsome. We had time for lunch and some nice conversation together alone and even some back to school shopping.
Today was a huge day of celebration (although you would have never known it really). Today marked 9 months since Daniel’s Bone Marrow Transplant. If you think about it , it is remarkable how well he is doing. How amazing he looks and is feeling. We had a slight side step with an impromptu many hour appointment at the eye clinic because Daniel was having some weird stuff going on with his eye. We don’t take any chances or think twice about checking everything out . Does it mess up a day, yes? Was I grateful I went when after 3 hours and extensive tests that ensured that Daniel’s CMV is for sure gone and his symptoms he is having are just some residual obstruction from Monday’s procedure, HELLS YES!
With that out of the way Daniel went to work out then for dinner with his Brother while Rob and I went to a kick off dinner for a Golf Tournament this upcoming Friday. Our niece Alexis is organizing an annual event that benefits Brent’s Place that is ironically an extension of Children’s Hospital that provides a safe clean place for children and families to heal during and after chemotherapy and after a bone marrow transplant. I am so thankful that we live close enough to the hospital(within 20 minutes) and can provide this environment for Daniel ourselves. I have come to know many of the families having to live at Brent’s Place while we lived in the hospital over the last year and am amazed at the resilience it takes to be away fom your home and own resources as long as many of them are. One that comes to mind in fact has lived there away from her home and family over 450 days. Can you even imagine? At least Rob did my laundry and brought us food most days. Therefore, Rob and I decided to sponsor a team in honor of Daniel knowing how fortunate we have been and we would like to lend our support in this small way. We look forward to helping Alexis raise lots of money for Brent’s Place and all they do for these families so they can concentrate on just their kids needs.
Yesterday we got great news that we are into our third week of negative counts for CMV. I think this is the longest we have gone negative. Great, great news! Honest to G-d the Doctor is not even sure of a plan and we are going to take it week by week at this point because even they have not even been in this scenario so I can’t tell you what the plan is going to be from her for his CMV. We are flying blind from here. I know not reassuring but we got nothing else for now. As far as the lymphocyte function test that tells us about if he will be ready for immunizations and school, well we had a bit of a miscommunication with dates and I can just hope we get the results by next week since that is when school starts. Once again today is at 9 months post transplant and we never thought he would be leaving the house before a year post so I will not complain.
Today was a huge day of celebration (although you would have never known it really). Today marked 9 months since Daniel’s Bone Marrow Transplant. If you think about it , it is remarkable how well he is doing. How amazing he looks and is feeling. We had a slight side step with an impromptu many hour appointment at the eye clinic because Daniel was having some weird stuff going on with his eye. We don’t take any chances or think twice about checking everything out . Does it mess up a day, yes? Was I grateful I went when after 3 hours and extensive tests that ensured that Daniel’s CMV is for sure gone and his symptoms he is having are just some residual obstruction from Monday’s procedure, HELLS YES!
With that out of the way Daniel went to work out then for dinner with his Brother while Rob and I went to a kick off dinner for a Golf Tournament this upcoming Friday. Our niece Alexis is organizing an annual event that benefits Brent’s Place that is ironically an extension of Children’s Hospital that provides a safe clean place for children and families to heal during and after chemotherapy and after a bone marrow transplant. I am so thankful that we live close enough to the hospital(within 20 minutes) and can provide this environment for Daniel ourselves. I have come to know many of the families having to live at Brent’s Place while we lived in the hospital over the last year and am amazed at the resilience it takes to be away fom your home and own resources as long as many of them are. One that comes to mind in fact has lived there away from her home and family over 450 days. Can you even imagine? At least Rob did my laundry and brought us food most days. Therefore, Rob and I decided to sponsor a team in honor of Daniel knowing how fortunate we have been and we would like to lend our support in this small way. We look forward to helping Alexis raise lots of money for Brent’s Place and all they do for these families so they can concentrate on just their kids needs.
Yesterday we got great news that we are into our third week of negative counts for CMV. I think this is the longest we have gone negative. Great, great news! Honest to G-d the Doctor is not even sure of a plan and we are going to take it week by week at this point because even they have not even been in this scenario so I can’t tell you what the plan is going to be from her for his CMV. We are flying blind from here. I know not reassuring but we got nothing else for now. As far as the lymphocyte function test that tells us about if he will be ready for immunizations and school, well we had a bit of a miscommunication with dates and I can just hope we get the results by next week since that is when school starts. Once again today is at 9 months post transplant and we never thought he would be leaving the house before a year post so I will not complain.