Waiting
Since being home it has been harder to keep Steven from over doing it, and from pushing himself too hard. I am ever so thankful that simply being in his home environment has seemed to give him strength, but I wish he would take heart the words of the doctor AND take caution. I find myself reminding him of the complexities of his position daily. You see, he feels well. And since he feels well, it is hard to believe he isn't well. It is even harder on him when others, blind to the medical miracle taking place in his body, ask if (or when) he is (or will be) back to work.
Steven is the hardest worker I know. I've said it before and I would meet head on anyone who challenged that. Sitting still is foreign to him and I know, only because he has had ample time to think about how quickly our time on earth can end, that the only thing holding him back is the knowledge of what a risk it would be to his health right now.
I explained earlier on Facebook a few of the complexities of the bone marrow stem cell transplant procedure. During this process, one thing my eyes have been opened to is how AMAZINGLY incredible our bodies are. The picture of the actual transplant made it all look so easy. Simple, in fact, but what was happening was anything but. You see, Jammie and Steven had the same blood type, but that was not a requirement to be a donor match. For those who receive stem cells from a donor with a different blood type....their blood type will change. CHANGE!!! I never even knew that was possible. A person could go into transplant with one blood type and a few days afterwards, be a totally different blood type. Who knew our bodies were capable of this? Who was smart enough to figure out how to detect and monitor this? How complex and thorough was God in designing our body?
Also, Steven is now considered a "newborn". In fact, the nurses joked that December 9th was his new birthday. He is new. So new, in fact, that in a year he will have to receive his childhood immunizations again.
Although no longer in the hospital, the transplant procedure is, in a way, still ongoing. Jammie's immune system has now taken up residence in Steven's body thanks to the transplant. This is what we wanted and a blood test a few weeks ago showed that Steven is now making 100% of Jammie's cells.
Steven's bone marrow has been overthrown and Jammie's stem cells have set up shop and have taken over production.
This is good.
However, as I stated before, the process isn't actually as easy as all that. Jammie's immune system spent 44 years in Jammie's body identifying and destroying anything that was foreign. This is what kept him healthy. Your immune system, when working properly, does the same for you.
From attacking a cold virus, or bacteria that seeps into a paper cut, or mold spores that rise up into the air when you dig in the dirt and enter your lungs when you breathe, your immune system is there, keeping you well and keeping infection at bay.
But Steven's, technically Jammie's, isn't able to protect Steven from those things...yet.
Why?
Well, because Jammie has a healthy immune system and that system has fine tuned it's ability to recognize all things "foreign", it is now recognizing that it is not in it's old, familiar home: Jammie's body. The surroundings are similar to those it resided in for 44 years, (Jammie and Steven were a 6/6 match), but not identical. For this reason the immune system is aggravated, and irritated, and trying to keep Jammie healthy. (Yeah, they haven't realized it's Steven yet. Soon, though.) The immune system is all riled up and attacking Steven's skin cells. Skin cells are quick to divide and multiply and that seemed like a threat. So...they attack them. Hence, the rash. Also, your stomach has rapidly dividing cells and Jammie's immune system wanted to make sure it kept those in check, so it attacked Steven's. Hence, random vomiting. Also, the liver seems to be taking a hit, therefore Steven had elevated liver enzymes. These are all signs of Graft Vs. Host Disease and the spectrum of severity is broad.
However, you should know that all of the above symptoms have happened while Steven was taking immunosuppressants, which are drugs whose main purpose is to keep the immune system pushed way down. Thankfully, none of his reactions have been life threatening, but, rather, a sign that even while suppressed, Jammie's immune system is fully functioning. However, if not suppressed until it becomes "familiar" with it's new surroundings, Jammie's immune system could be fatal to Steven, attacking systems and organs that are vital to Steven's survival.
We are so very thankful, though, for the signs that Jammie's immune system is working. It is so very important because, IF the cancer returns, and the doctors seemed to believe it would, Jammie's immune system would, most likely, recognize IT as foreign and attack it as well. This is the whole reason that we have taken this chance. It is our only hope. Although science is continually evolving, right now, this is the only effective way to treat Steven's form of leukemia. And it isn't guaranteed.
But it has given us hope.
Unfortunately, like most things, there are risks. One physician stated about the transplant, "it has the biggest risk...but the biggest potential reward".
That is what we are keeping our eyes on. The reward.
I know all too well that the reward isn't guaranteed. I spoke with, and was familiar with, three families whose loved ones did not make it off of the 5th floor of the hospital while Steven was hospitalized in December. Two never made it out after transplant and one succumbed to Graft Vs. Host Disease.
So you see, we aren't out of the woods. We are getting closer each day, but until the immunosuppressants are eliminated, Steven has no protection from simple, day to day, infections that we don't even think about. The doctors have given him permission to be in public and to use common sense. However, they have not given him permission to go back to work, a job in which he digs, welds, and works with barbed-wire; a job which opens Steven up to a whole other host of threats that can be avoided by simply waiting until his body is ready.
Most people are kept nearby the hospital because of the increased risk of infection until day 100. Steven was an exception, but he is not an exception to the risk. He has the responsibility of always keeping an eye on the risks around him. Hopefully, near the 100 day mark, which is mid to late March, Steven will be able to come off of the suppressants and get a little closer to normal. I have heard, though, that his new immune system could take up to two years to be fully functioning again.
We will gladly wait two years. We will wait a lifetime, if need be,...all while praying it is a long one.
Also, Steven is now considered a "newborn". In fact, the nurses joked that December 9th was his new birthday. He is new. So new, in fact, that in a year he will have to receive his childhood immunizations again.
Although no longer in the hospital, the transplant procedure is, in a way, still ongoing. Jammie's immune system has now taken up residence in Steven's body thanks to the transplant. This is what we wanted and a blood test a few weeks ago showed that Steven is now making 100% of Jammie's cells.
Steven's bone marrow has been overthrown and Jammie's stem cells have set up shop and have taken over production.
This is good.
However, as I stated before, the process isn't actually as easy as all that. Jammie's immune system spent 44 years in Jammie's body identifying and destroying anything that was foreign. This is what kept him healthy. Your immune system, when working properly, does the same for you.
From attacking a cold virus, or bacteria that seeps into a paper cut, or mold spores that rise up into the air when you dig in the dirt and enter your lungs when you breathe, your immune system is there, keeping you well and keeping infection at bay.
But Steven's, technically Jammie's, isn't able to protect Steven from those things...yet.
Why?
Well, because Jammie has a healthy immune system and that system has fine tuned it's ability to recognize all things "foreign", it is now recognizing that it is not in it's old, familiar home: Jammie's body. The surroundings are similar to those it resided in for 44 years, (Jammie and Steven were a 6/6 match), but not identical. For this reason the immune system is aggravated, and irritated, and trying to keep Jammie healthy. (Yeah, they haven't realized it's Steven yet. Soon, though.) The immune system is all riled up and attacking Steven's skin cells. Skin cells are quick to divide and multiply and that seemed like a threat. So...they attack them. Hence, the rash. Also, your stomach has rapidly dividing cells and Jammie's immune system wanted to make sure it kept those in check, so it attacked Steven's. Hence, random vomiting. Also, the liver seems to be taking a hit, therefore Steven had elevated liver enzymes. These are all signs of Graft Vs. Host Disease and the spectrum of severity is broad.
However, you should know that all of the above symptoms have happened while Steven was taking immunosuppressants, which are drugs whose main purpose is to keep the immune system pushed way down. Thankfully, none of his reactions have been life threatening, but, rather, a sign that even while suppressed, Jammie's immune system is fully functioning. However, if not suppressed until it becomes "familiar" with it's new surroundings, Jammie's immune system could be fatal to Steven, attacking systems and organs that are vital to Steven's survival.
We are so very thankful, though, for the signs that Jammie's immune system is working. It is so very important because, IF the cancer returns, and the doctors seemed to believe it would, Jammie's immune system would, most likely, recognize IT as foreign and attack it as well. This is the whole reason that we have taken this chance. It is our only hope. Although science is continually evolving, right now, this is the only effective way to treat Steven's form of leukemia. And it isn't guaranteed.
But it has given us hope.
Unfortunately, like most things, there are risks. One physician stated about the transplant, "it has the biggest risk...but the biggest potential reward".
That is what we are keeping our eyes on. The reward.
I know all too well that the reward isn't guaranteed. I spoke with, and was familiar with, three families whose loved ones did not make it off of the 5th floor of the hospital while Steven was hospitalized in December. Two never made it out after transplant and one succumbed to Graft Vs. Host Disease.
So you see, we aren't out of the woods. We are getting closer each day, but until the immunosuppressants are eliminated, Steven has no protection from simple, day to day, infections that we don't even think about. The doctors have given him permission to be in public and to use common sense. However, they have not given him permission to go back to work, a job in which he digs, welds, and works with barbed-wire; a job which opens Steven up to a whole other host of threats that can be avoided by simply waiting until his body is ready.
Most people are kept nearby the hospital because of the increased risk of infection until day 100. Steven was an exception, but he is not an exception to the risk. He has the responsibility of always keeping an eye on the risks around him. Hopefully, near the 100 day mark, which is mid to late March, Steven will be able to come off of the suppressants and get a little closer to normal. I have heard, though, that his new immune system could take up to two years to be fully functioning again.
We will gladly wait two years. We will wait a lifetime, if need be,...all while praying it is a long one.
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