First -Thank you! Thank you! Thank you! All your prayers last week were felt.
As I wrote before, we got approval for the mylotarg on Friday. Thankfully things got rolling quickly thereafter. We were able to start treatment on Tuesday which is a huge blessing because that meant that an additional round of the dacogin was not necessary.
Joe has received two doses already and will get his last primary dose on Monday. Aside from some fairly intense nausea on Tuesday night things have gone very smoothly. The biggest concern right now is for his liver. In approximately 50% of patients receiving mylotarg the liver is stressed. The team has been and will be closely monitoring Joe’s liver enzymes. So far his numbers have been completely normal (huge praise), although we will not be in the clear from that threat for a while longer. Please join us in praying protection over his liver specifically.
We won’t be sure of the next steps until they determine how his body reacts to the first three doses. If all is well, they will administer a maintenance dose of the myoltarg to hold his progress until transplant. The team is currently contacting Joe’s potential donors to begin the scheduling process. This could be difficult with the holidays coming up, but if all goes well we could be in for transplant sometime in December.
It is a terrifying thing, but I feel strong hope again. It’s been 5 months since I last felt this. I hate that hope, in and of itself, has become something that I fear. I know that this fear should not be. I know that God wants me to rest in and fully feel the peace of hope, but after the past 15 months I feel that it is almost impossible to remain optimistic. After all we’ve been through I let myself believe that hope was foolish and allowing it would open myself to more hurt. Although it is difficult, I am fighting against that notion. I am forcing myself to know that I can be fully realistic, fully aware of the statistics, fully feel the lose we’ve had and still cling to hope. I think that we as humans can muster up hope but the truest deepest form of it comes from God. With that, I now trust that if I sit in His hope my heart will be safe.
My prayer going forward is that this hope increases. Outside of prayer for that, please continue to pray for our steps going forward. I feel as though the last leg of this treatment is within sight once again. Please pray it comes quickly and that we can endure what is left of this phase. There will be many phases to come but we are trying to keep focus on what we are called to now. We love you all dearly and cherish every prayer you send for us.
Joe has received two doses already and will get his last primary dose on Monday. Aside from some fairly intense nausea on Tuesday night things have gone very smoothly. The biggest concern right now is for his liver. In approximately 50% of patients receiving mylotarg the liver is stressed. The team has been and will be closely monitoring Joe’s liver enzymes. So far his numbers have been completely normal (huge praise), although we will not be in the clear from that threat for a while longer. Please join us in praying protection over his liver specifically.
We won’t be sure of the next steps until they determine how his body reacts to the first three doses. If all is well, they will administer a maintenance dose of the myoltarg to hold his progress until transplant. The team is currently contacting Joe’s potential donors to begin the scheduling process. This could be difficult with the holidays coming up, but if all goes well we could be in for transplant sometime in December.
It is a terrifying thing, but I feel strong hope again. It’s been 5 months since I last felt this. I hate that hope, in and of itself, has become something that I fear. I know that this fear should not be. I know that God wants me to rest in and fully feel the peace of hope, but after the past 15 months I feel that it is almost impossible to remain optimistic. After all we’ve been through I let myself believe that hope was foolish and allowing it would open myself to more hurt. Although it is difficult, I am fighting against that notion. I am forcing myself to know that I can be fully realistic, fully aware of the statistics, fully feel the lose we’ve had and still cling to hope. I think that we as humans can muster up hope but the truest deepest form of it comes from God. With that, I now trust that if I sit in His hope my heart will be safe.
My prayer going forward is that this hope increases. Outside of prayer for that, please continue to pray for our steps going forward. I feel as though the last leg of this treatment is within sight once again. Please pray it comes quickly and that we can endure what is left of this phase. There will be many phases to come but we are trying to keep focus on what we are called to now. We love you all dearly and cherish every prayer you send for us.
