Monday was filled to the brim with information and all the feelings.
It began with an unexpected appointment with our main doctor whom we don’t often see. (When we go to clinic three times a week we are cared for by an amazing team of nurses and physician assistants.) In this appointment we learned that things are moving along quicker that we anticipated. I believe this is in part due to the fact that Joe has handled the mylotarg so well. While he has hit the low point of this cycle and had a lot of fatigue, his liver enzymes have stayed completely normal.
This morning Joe had his 8th biopsy. The outcome of this will lead us one of a few ways. The most likely of which is transplant. If the marrow shows the same or (hopefully) better results than the last we will be scheduled for the transplant process to begin November 29th. If there is regression (which feels very unlikely to us) then we will be moving to symptom management and palliative care. There is also a Very small chance that they will want to try another round of mylotarg if they see a partial response.
This in itself was a lot to digest but on top of that we got more intense news. The doctor has been pleasantly surprised by how Joe has been holding up this past month. In turn he has decided to change the transplant plan a bit. Previously we had been told to prepare for Joe getting a “mini-transplant” which would be handled all out patient at the clinic. The conditioning chemo for a mini is about 20% as intense as the conditioning that Joe went through last time. This is a wonderful option for weaker patients however the risk with this is that the chance of relapse is much higher. Our doctor feels that since Joe is stronger than he had anticipated and because his disease is particularly stubborn our best chance at a cure is to instead continue with “reduced intensity conditioning” which is about 70% as intense as his first transplant.
While it is encouraging that the doctor feels Joe is strong enough to have this be an option, it is terrifying for us. Not only will the conditioning be so hard on Joe but going forward with this it means that we will have to be in patient again for a minimum of one week. I want to be clear in saying that I am SO thankful for hospitals. But at the risk of sounding melodramatic, they are soul crushing! There were a couple of nights during the first transplant that were fairly traumatic and neither of us is eager to return.
Please be praying for these results and peace for us as we prepare our hearts and minds for whatever the next chapter holds. We’re doing our best to get ready for this battle, but it’s difficult to wrap our head around all our feelings.
In addition to all of that, we got news that one of our fellow patients here passed last week. He was a young man who had his transplant shortly before Joe’s and has struggled with Grafts Versus Host Disease since. While we never knew his circumstances intimately we were able to watch him diligently fight throughout his battle. The weight of this hit both of us hard. Not only with sorrow for the loss that his family is feeling but also with fear and trepidation for us.
Please be praying for this time that we have together before we move forward. We’ve taken Arleigh out of school through Thanksgiving and are enjoying some much needed family time. Please pray for Arleigh’s sweet tender heart in all of this. Pray for all our hearts. Pray for the results. Pray for our fellow patients family and that the Lord would ease the pain of their loss. Pray that we can move to transplant and that our hospital stay will be short. Pray for Joe’s donor. Pray that he has support in place to ease pray that we will feel confidence and strength to walk the road we are called to. Thank you so much.
This morning Joe had his 8th biopsy. The outcome of this will lead us one of a few ways. The most likely of which is transplant. If the marrow shows the same or (hopefully) better results than the last we will be scheduled for the transplant process to begin November 29th. If there is regression (which feels very unlikely to us) then we will be moving to symptom management and palliative care. There is also a Very small chance that they will want to try another round of mylotarg if they see a partial response.
This in itself was a lot to digest but on top of that we got more intense news. The doctor has been pleasantly surprised by how Joe has been holding up this past month. In turn he has decided to change the transplant plan a bit. Previously we had been told to prepare for Joe getting a “mini-transplant” which would be handled all out patient at the clinic. The conditioning chemo for a mini is about 20% as intense as the conditioning that Joe went through last time. This is a wonderful option for weaker patients however the risk with this is that the chance of relapse is much higher. Our doctor feels that since Joe is stronger than he had anticipated and because his disease is particularly stubborn our best chance at a cure is to instead continue with “reduced intensity conditioning” which is about 70% as intense as his first transplant.
While it is encouraging that the doctor feels Joe is strong enough to have this be an option, it is terrifying for us. Not only will the conditioning be so hard on Joe but going forward with this it means that we will have to be in patient again for a minimum of one week. I want to be clear in saying that I am SO thankful for hospitals. But at the risk of sounding melodramatic, they are soul crushing! There were a couple of nights during the first transplant that were fairly traumatic and neither of us is eager to return.
Please be praying for these results and peace for us as we prepare our hearts and minds for whatever the next chapter holds. We’re doing our best to get ready for this battle, but it’s difficult to wrap our head around all our feelings.
In addition to all of that, we got news that one of our fellow patients here passed last week. He was a young man who had his transplant shortly before Joe’s and has struggled with Grafts Versus Host Disease since. While we never knew his circumstances intimately we were able to watch him diligently fight throughout his battle. The weight of this hit both of us hard. Not only with sorrow for the loss that his family is feeling but also with fear and trepidation for us.
Please be praying for this time that we have together before we move forward. We’ve taken Arleigh out of school through Thanksgiving and are enjoying some much needed family time. Please pray for Arleigh’s sweet tender heart in all of this. Pray for all our hearts. Pray for the results. Pray for our fellow patients family and that the Lord would ease the pain of their loss. Pray that we can move to transplant and that our hospital stay will be short. Pray for Joe’s donor. Pray that he has support in place to ease pray that we will feel confidence and strength to walk the road we are called to. Thank you so much.
