Today was the big day. Our last official clinic day!
Although it was a day surrounded with the idea of celebration, it was not completely fantastic. That is not to say we aren’t ecstatic to go home. Believe me, we are! After less than two weeks together in our own home over that past 7+ months we are SO happy and SO thankful! But because Joe had been feeling so well, we went into today with the thought that we would see his numbers climb, get the biopsy done, get his Hickman out and hit the road tomorrow. We did get the biopsy done and do get the head back tomorrow, which are both wonderful reasons to celebrate. However, his numbers took another dip and they decided to leave his Hickman in for at least two more weeks. These could be considered “minor” but if I’m being totally honest…. I am totally sick of not having things work out the way I think they should (emphasis on “I”).
So, what does that mean for us? The numbers could be nothing……or they could be something. Since he had a t-cell depleted transplant, it naturally takes longer for recovery and engraftment and this can cause extended lulls in numbers. That could be what the numbers are reflecting. However, the lower numbers could mean that the transplant isn’t engrafting, a virus is hiding in the marrow or (the biggest fear) disease presence. The good news is that as of now we have a “game plan” for all of these.
The doctors have already decided that a DIL (aka: a boost of his sisters cells) would be necessary. This is partly why the decided to leave in the Hickman (which will make the procedure a lot easier). Worst case scenario, he would have to do another small round of chemo prior to the boost. Obviously, we would love for this to not be the case. Our hope is that on Friday (preferably, morning so we don’t have to wait any longer than necessary) we will hear from the doctor that his marrow looks wonderful and is TOTALLY disease free! At that point we will cry a million happy tears and PARTY!!!!!
But let me get real with y’all for a minute. Hope has become a terrifying concept to me this year. I don’t really know how to describe that any further, but I know that anyone who has been through suspended crisis will understand. It is as though every “good” has a challenge attached. There have been more disappointments and heartbreaks in this season than I can count. I trust that God is teaching me though this, but it is so hard. I am doing a bible study on the beatitudes (Matt 5:1-16). Today’s study was on vs. 3 “Blessed are the poor in spirit, for theirs is the kingdom of heaven.” That had always been an abstract idea to me, I never was able to wrap my mind around what “poor in spirit” meant. This study said “The poor in spirit have nothing, but that nothingness empties them of the illusion of their own power, enabling them to rely wholly on God.” This is absolutely where I am, empty. I am so poor that I fear hope. BUT, I can thank God because it is at this point He somehow allows me to enter into His kingdom on earth and fills me with His Hope which is So much grander than mine.
With that I will leave you with a song that has lifted me on several occasions recently and ask you to once again join us in praying for healing and peace in the waiting and of course in celebration of going home!!!!
So, what does that mean for us? The numbers could be nothing……or they could be something. Since he had a t-cell depleted transplant, it naturally takes longer for recovery and engraftment and this can cause extended lulls in numbers. That could be what the numbers are reflecting. However, the lower numbers could mean that the transplant isn’t engrafting, a virus is hiding in the marrow or (the biggest fear) disease presence. The good news is that as of now we have a “game plan” for all of these.
The doctors have already decided that a DIL (aka: a boost of his sisters cells) would be necessary. This is partly why the decided to leave in the Hickman (which will make the procedure a lot easier). Worst case scenario, he would have to do another small round of chemo prior to the boost. Obviously, we would love for this to not be the case. Our hope is that on Friday (preferably, morning so we don’t have to wait any longer than necessary) we will hear from the doctor that his marrow looks wonderful and is TOTALLY disease free! At that point we will cry a million happy tears and PARTY!!!!!
But let me get real with y’all for a minute. Hope has become a terrifying concept to me this year. I don’t really know how to describe that any further, but I know that anyone who has been through suspended crisis will understand. It is as though every “good” has a challenge attached. There have been more disappointments and heartbreaks in this season than I can count. I trust that God is teaching me though this, but it is so hard. I am doing a bible study on the beatitudes (Matt 5:1-16). Today’s study was on vs. 3 “Blessed are the poor in spirit, for theirs is the kingdom of heaven.” That had always been an abstract idea to me, I never was able to wrap my mind around what “poor in spirit” meant. This study said “The poor in spirit have nothing, but that nothingness empties them of the illusion of their own power, enabling them to rely wholly on God.” This is absolutely where I am, empty. I am so poor that I fear hope. BUT, I can thank God because it is at this point He somehow allows me to enter into His kingdom on earth and fills me with His Hope which is So much grander than mine.
With that I will leave you with a song that has lifted me on several occasions recently and ask you to once again join us in praying for healing and peace in the waiting and of course in celebration of going home!!!!
