It is once again difficult to put the past few days in to words. I pray now, as I always should but often fail to, that my written words would accurately tell this story.
That they would give a transparent and honest picture of this journey we walk. Not merely so you can accurately pray for us but also in hope that our story may somehow encourage you. Especially if said encouragement leads you to love more deeply.
Sunday night Joe spiked a fever. For patients undergoing chemo, fevers are particularly worrisome due to the fact their white blood count is often depleted. To give context, an adults normal white blood cell count could be anywhere from 4.5 to 10.8, Joe’s count has been 0.1 this week. With this being the case, we can’t throw him a Tylenol and a cool rag. We go to the hospital.
So that’s what we did last night. Rather than negotiating with our daughter over how many more cuddles she could have before bed, we left her (thankfully) in the care of her incredible loving Grandma. We left to return to a place we simultaneously hate and profoundly appreciate.
Initially the team was encouraged by how stable Joe was. We had caught this, whatever it was, early. We were told it was possible that we would go home in the morning with an IV antibiotic fanny pack in tow. While we were less than thrilled to be spending the night, things were still looking ok. All we had to do was get the all clear during rounds the next day then back to the apartment we would go for more much needed family time.
Rounds came. All clear was not given. One of the blood cultures they took came back with a sign of gram positive bacteria. What was more concerning to the team was the fact that because of the recent chemo and the bacteria presence Joe was requiring multiple transfusions of both blood and platelets a day. They could not send us home until they found the source of the infection and his numbers were more stable.
Disappointment does not begin to cover what I was feeling. We would have to be patient and wait for further culture results. When they came on Tuesday it was yet again not what we wanted to hear. The source of the infection was Joe’s PICC line. This meant they would have to pull the line and use Peripheral IV’s until the infection was under control. Since peripheral IVs are so unstable, they are not approved for outpatient treatment.
So there we were once again; a few days before Thanksgiving, with an infected PICC line and no hope of being discharged before Thursday. In the hours before we got the final word I Cried out to God, I begged that he clear the infection. That He would do something so we could return to the apartment quickly. I prayed with faith and complete confidence of His power. But God said no.
I do trust that “…all things work together for good to them that love God, to them who are the called according to his purpose” however, all I felt in the moment was anger and sorrow. I more than ever feel connected to King David crying out “My God, my God, why have you forsaken me? Why are you so far from saving me, so far from my cries of anguish? My God, I cry out by day, but you do not answer, by night, but I find no rest.”
Yet in that moment of pain there was a glimmer of mercy. Our head PA happened to come by in the middle of rounds. While she completely agreed that the line needed to be pulled, she saw our pain and advocated for us. She suggested that we continue with the plan but also that they swap around the schedule and give Joe a day pass so we would be able to leave for a few hours on Thanksgiving Day. While it isn’t much, it will allow us a short reprieve, with our sweet Arleigh and Joe’s parents. Obviously not ideal, however, I know both as a child of God and as a parent our wishes don’t always line up with what is best for us. In this circumstance what is best is Joe being cared for in the best way possible so that we can move to transplant.
Which leads me to my final point (aka: the joy that is carrying us through this mess of a week). Joe’s biopsy results came back and they were good. In fact, his marrow looks better now than any other sample they’ve taken. There were ZERO blast cells and the cellularity (the population of the cells) was low. This is absolutely ideal for transplant. His doctor actually said it couldn’t have come back any better. We are scheduled to be admitted December 7th with 5 days of chemo before transplant. We got approval from insurance for the second transplant and confirmation from our donor. I am absolutely overwhelmed by the idea of one day talking to this young man from South Dakota and thanking him for giving us a chance at life. Please pray for him, we don’t know his name, but lift him up, pray he feels our love and gratitude.
The road has been and will continue to be ugly but with all of this whirling in my mind I am left reflecting again on the wise words of Job. “Though he slay me, yet will I trust in Him”(13:15). Job’s words came from a place of such immense loss from every aspect of his life. On one hand reading this reminds me of all that we still have and all the blessing that God has lavished on us in this season. However, if I am trying to be transparent I need to say that Joe and I are feeling slain right now. We want to trust God and pour out thanks for the joy that has met our sorrow, but right now we are still dealing with mental anguish, sorrow and fairly substantial physical pain. I ask you on this eve of Thanksgiving that you lift us up. That we would not only be given a heart of trust and thanksgiving, but also that God would give us reprieve from our pain and sorrow. That He would give us rest so that we can enter in to transplant #2 ready to fight.
Sunday night Joe spiked a fever. For patients undergoing chemo, fevers are particularly worrisome due to the fact their white blood count is often depleted. To give context, an adults normal white blood cell count could be anywhere from 4.5 to 10.8, Joe’s count has been 0.1 this week. With this being the case, we can’t throw him a Tylenol and a cool rag. We go to the hospital.
So that’s what we did last night. Rather than negotiating with our daughter over how many more cuddles she could have before bed, we left her (thankfully) in the care of her incredible loving Grandma. We left to return to a place we simultaneously hate and profoundly appreciate.
Initially the team was encouraged by how stable Joe was. We had caught this, whatever it was, early. We were told it was possible that we would go home in the morning with an IV antibiotic fanny pack in tow. While we were less than thrilled to be spending the night, things were still looking ok. All we had to do was get the all clear during rounds the next day then back to the apartment we would go for more much needed family time.
Rounds came. All clear was not given. One of the blood cultures they took came back with a sign of gram positive bacteria. What was more concerning to the team was the fact that because of the recent chemo and the bacteria presence Joe was requiring multiple transfusions of both blood and platelets a day. They could not send us home until they found the source of the infection and his numbers were more stable.
Disappointment does not begin to cover what I was feeling. We would have to be patient and wait for further culture results. When they came on Tuesday it was yet again not what we wanted to hear. The source of the infection was Joe’s PICC line. This meant they would have to pull the line and use Peripheral IV’s until the infection was under control. Since peripheral IVs are so unstable, they are not approved for outpatient treatment.
So there we were once again; a few days before Thanksgiving, with an infected PICC line and no hope of being discharged before Thursday. In the hours before we got the final word I Cried out to God, I begged that he clear the infection. That He would do something so we could return to the apartment quickly. I prayed with faith and complete confidence of His power. But God said no.
I do trust that “…all things work together for good to them that love God, to them who are the called according to his purpose” however, all I felt in the moment was anger and sorrow. I more than ever feel connected to King David crying out “My God, my God, why have you forsaken me? Why are you so far from saving me, so far from my cries of anguish? My God, I cry out by day, but you do not answer, by night, but I find no rest.”
Yet in that moment of pain there was a glimmer of mercy. Our head PA happened to come by in the middle of rounds. While she completely agreed that the line needed to be pulled, she saw our pain and advocated for us. She suggested that we continue with the plan but also that they swap around the schedule and give Joe a day pass so we would be able to leave for a few hours on Thanksgiving Day. While it isn’t much, it will allow us a short reprieve, with our sweet Arleigh and Joe’s parents. Obviously not ideal, however, I know both as a child of God and as a parent our wishes don’t always line up with what is best for us. In this circumstance what is best is Joe being cared for in the best way possible so that we can move to transplant.
Which leads me to my final point (aka: the joy that is carrying us through this mess of a week). Joe’s biopsy results came back and they were good. In fact, his marrow looks better now than any other sample they’ve taken. There were ZERO blast cells and the cellularity (the population of the cells) was low. This is absolutely ideal for transplant. His doctor actually said it couldn’t have come back any better. We are scheduled to be admitted December 7th with 5 days of chemo before transplant. We got approval from insurance for the second transplant and confirmation from our donor. I am absolutely overwhelmed by the idea of one day talking to this young man from South Dakota and thanking him for giving us a chance at life. Please pray for him, we don’t know his name, but lift him up, pray he feels our love and gratitude.
The road has been and will continue to be ugly but with all of this whirling in my mind I am left reflecting again on the wise words of Job. “Though he slay me, yet will I trust in Him”(13:15). Job’s words came from a place of such immense loss from every aspect of his life. On one hand reading this reminds me of all that we still have and all the blessing that God has lavished on us in this season. However, if I am trying to be transparent I need to say that Joe and I are feeling slain right now. We want to trust God and pour out thanks for the joy that has met our sorrow, but right now we are still dealing with mental anguish, sorrow and fairly substantial physical pain. I ask you on this eve of Thanksgiving that you lift us up. That we would not only be given a heart of trust and thanksgiving, but also that God would give us reprieve from our pain and sorrow. That He would give us rest so that we can enter in to transplant #2 ready to fight.
