Hydration working; elecrolyte numbers almost normal. Rash improving at least a little bit. John even thinks he feels a little better today.
The dehydration could have been at least partially due to "insensible loss" through the rashy, peeling skin. Rehydration is accompanied by drops in the blood cell counts. They may have been concentrated in a smaller volume and now that more fluids have been introduced the concentration/ cell count is lower. The counts are still ok even though they are lower - 4.2 wbc, 9.2 hemoglobin, 92,000 platelets.
Just a tidbit from John's doctor in case you ever need to increase your sodium and lower your potassium at the same time - Regular Campbell's chicken noodle soup (not the low sodium version) will increase sodium without increasing the potassium. Most foods high in sodium are also high in potassium. Interestingly, John had started requesting Campbell's chicken noodle soup a couple of weeks ago before we knew about any of this; he was just hungry for it. I guess we should trust our guts.
Saturday, December 8, 2012
Friday, December 7, 2012
12/7
This is some tough sledding. John was readmitted to the hospital last night after our weekly doctor appointment.
He is dehyrated and has graft v host disease. Since John's cancer first showed up in the skin and the therapies, chemo and treatments all affected the skin, John's doctor said if anyone was ever going to develop gvh as a complication of transplant, it would be John. He was right; looking for something positive about this, the gvh may well improve the graft v cancer effect in the future.
Dehydration affects electrolyte balance and kidney function. That's reflected in his dropping sodium, rising potassium, and elevated creatinine levels. He has been working very hard to drink more but hasn't been able to get rehydrated on his own. GVH adds an additional challenge. The new immune system is "attacking" the "John" proteins in his skin - he looks like he has a terrible sunburn and now his skin is sloughing off. Skin is a barrier to infection and helps trap moisture so losing it makes rehydration even harder.
John is getting IV fluids and steroids in the hospital. The steroids should help get the gvh under control; maybe he isn't absorbing the oral steroids and the IV therapy might kick start a recovery. John's blood sugar is high; his doctor says this is most likely a result of the steroid therapy. That is being treated with insulin; finger tip pricks 5x/day have been added to his list of treatments/procedures.
The first 24 hours haven't been restful. A picc line was installed because it was too hard to find a vein to draw from for the many blood tests. He has had 2 chest x-rays; the first one revealed a coiled up portion of the picc line. The line was forcefully flushed to try to straighten out the kink; the second x-ray results show it was a successful maneuver. Yay! Since the pic is straightened out, the IV line can be removed and the picc line can transport the meds, fluids and be used for blood draws. John has had a kidney function test - all is good; hydration should take care of the electrolyte and creatinine problems. A cat scan shows the lungs are stable or even a little improved. No temps and no infections.
John has gained 4 pounds in the past week (which still leaves him about 15 pounds below his high school weight). He has been a little nauseous in the hospital although he is doing his best to eat and drink. Zofran reduces the nausea but we haven't gotten the timing just right yet so he can eat without discomfort.
We'll be here for at least the weekend. If you're looking for something to do this weekend (because everyone has so much free time at this time of year...) rent the movie A Cat in Paris. We guarantee you'll love it.
He is dehyrated and has graft v host disease. Since John's cancer first showed up in the skin and the therapies, chemo and treatments all affected the skin, John's doctor said if anyone was ever going to develop gvh as a complication of transplant, it would be John. He was right; looking for something positive about this, the gvh may well improve the graft v cancer effect in the future.
Dehydration affects electrolyte balance and kidney function. That's reflected in his dropping sodium, rising potassium, and elevated creatinine levels. He has been working very hard to drink more but hasn't been able to get rehydrated on his own. GVH adds an additional challenge. The new immune system is "attacking" the "John" proteins in his skin - he looks like he has a terrible sunburn and now his skin is sloughing off. Skin is a barrier to infection and helps trap moisture so losing it makes rehydration even harder.
John is getting IV fluids and steroids in the hospital. The steroids should help get the gvh under control; maybe he isn't absorbing the oral steroids and the IV therapy might kick start a recovery. John's blood sugar is high; his doctor says this is most likely a result of the steroid therapy. That is being treated with insulin; finger tip pricks 5x/day have been added to his list of treatments/procedures.
The first 24 hours haven't been restful. A picc line was installed because it was too hard to find a vein to draw from for the many blood tests. He has had 2 chest x-rays; the first one revealed a coiled up portion of the picc line. The line was forcefully flushed to try to straighten out the kink; the second x-ray results show it was a successful maneuver. Yay! Since the pic is straightened out, the IV line can be removed and the picc line can transport the meds, fluids and be used for blood draws. John has had a kidney function test - all is good; hydration should take care of the electrolyte and creatinine problems. A cat scan shows the lungs are stable or even a little improved. No temps and no infections.
John has gained 4 pounds in the past week (which still leaves him about 15 pounds below his high school weight). He has been a little nauseous in the hospital although he is doing his best to eat and drink. Zofran reduces the nausea but we haven't gotten the timing just right yet so he can eat without discomfort.
We'll be here for at least the weekend. If you're looking for something to do this weekend (because everyone has so much free time at this time of year...) rent the movie A Cat in Paris. We guarantee you'll love it.
Tuesday, December 4, 2012
12/4
So, John is bright red all over (except his head) and by tonight the "rash" has become quite painful. The PA and nurse practitioner think it is most likely graft v host disease but just to be sure, they did a skin biopsy. In case you're wondering, that is a procedure where a topical anesthetic is injected to numb you to the third pencil size diameter tube of skin half an inch deep that is being drilled out of your arm. Judging from the expression on John's face, it looked like it pinched more than a "little bit." The results of the skin biopsy can be ambiguous and unable to totally rule in gvhd or rule out a drug reaction. Nonetheless, it was good to get checked out and to begin the treatment which is a massive dose of steroids to reduce the rash, pain and itchiness. An additional upside of the steroids is their potential to increase John's appetite; a downside is their potential to make John a little physically manic and to interrupt sleep. We see the dr on Thursday so we'll find out in a couple of days how the steroids are working.
What is going on here? For the literati, it is the new immune system saying "Hello! Here I am!" For the scientists, antigen-presenting cells in the skin (and some other organs like the liver) are still showing John's proteins which the new immune system recognizes as foreign now hence the new immune system attacks John. It's important to treat the gvhd early so it doesn't progress to a more advanced form that does more damage and is harder to treat. Seems likely that John's problem has been caught in plenty of time; we and the medical staff are optimistic.
We're told gvhd is a very common complication of transplant. Putting the best possible face on it, our nurses tell us it is a good sign that the new immune system is working :)
What is going on here? For the literati, it is the new immune system saying "Hello! Here I am!" For the scientists, antigen-presenting cells in the skin (and some other organs like the liver) are still showing John's proteins which the new immune system recognizes as foreign now hence the new immune system attacks John. It's important to treat the gvhd early so it doesn't progress to a more advanced form that does more damage and is harder to treat. Seems likely that John's problem has been caught in plenty of time; we and the medical staff are optimistic.
We're told gvhd is a very common complication of transplant. Putting the best possible face on it, our nurses tell us it is a good sign that the new immune system is working :)
Monday, December 3, 2012
12/3
Another step forward and another step back... John's horrid SPS suspension med that binds to his potassium has worked and he doesn't have to take it anymore. That is the step forward. But, he has developed a raised red rash over most of his body; we have to go to Philadelphia tomorrow so his doctors can determine if it is graft v host disease and that determination may require a skin biopsy. That is the step backward. If so, treatment would include steroids and maybe other measures. We will keep you updated. In a sense, the biopsy (if necessary) is probably nothing compared to what he has already been through. But, in another sense, it is one more procedure that at least sounds unpleasant on top of what he has been able to tolerate and surmount so far. Please say a quick prayer for him.
Thursday, November 29, 2012
11/29
It's been a long time between posts but there is some news to report after today's doctor visit. All of John's blood counts have improved - 7.6 wbc, 12.1 hemoglobin and 118,000 platelets. These counts are all below normal but they are all better than they were a week ago. Petichiae have appeared on John's lower legs but his doctors do not seemed overly concerned about this development.
John is a little dehydrated and has lost about 60 pounds - he is down to my high school weight now... The doctors offered appetite stimulants but not enthusiastically because of their side effects. For now John will do his best to get more fluids and calories on his own and we'll see next week whether that approach is working.
John is still really tired; his doctors recommend doing what he can but say recovery is very individual and somewhat dependent on what treatment preceeded the bone marrow transplant. John was receiving chemotherapy until a month before his transplant and has had 26 meds during this procedure so his recovery is going to require significant time.
The potassium and creatinine levels are elevated again; kidney function is also out of whack (please excuse the technical term). Dehydration and/or tacrolimus could be affecting these levels. John didn't have to take the tacro tonight until the test results come back; but, he had to restart the vile vials of medicine to bind to and lower the potassium. Ugh.
The newly engrafted stem cells are doing their thing (hence, the blood cell count improvements). Donor #1 seems to be dominant - no one knows who donor #1 is but this could never have happened without the help of all three of our amazing sons and their families. John's doctors describe his developing immune system as that of an infant; it should take about a year for it to become functional. In the meantime, he is supported with anti-bacterial, anti-viral and anti-fungal medications. Once the doctors determine he is ready, he will receive all of the childhood vaccinations again. On average, that's a year out from transplant so we'll be keeping him as microbe free as possible until then.
Progress is painfully slow but there is progress. We are hoping to report in another month that appetite and exercise are improving. Thanks for your interest; we will update you after next week's dr. appointment.
John is a little dehydrated and has lost about 60 pounds - he is down to my high school weight now... The doctors offered appetite stimulants but not enthusiastically because of their side effects. For now John will do his best to get more fluids and calories on his own and we'll see next week whether that approach is working.
John is still really tired; his doctors recommend doing what he can but say recovery is very individual and somewhat dependent on what treatment preceeded the bone marrow transplant. John was receiving chemotherapy until a month before his transplant and has had 26 meds during this procedure so his recovery is going to require significant time.
The potassium and creatinine levels are elevated again; kidney function is also out of whack (please excuse the technical term). Dehydration and/or tacrolimus could be affecting these levels. John didn't have to take the tacro tonight until the test results come back; but, he had to restart the vile vials of medicine to bind to and lower the potassium. Ugh.
The newly engrafted stem cells are doing their thing (hence, the blood cell count improvements). Donor #1 seems to be dominant - no one knows who donor #1 is but this could never have happened without the help of all three of our amazing sons and their families. John's doctors describe his developing immune system as that of an infant; it should take about a year for it to become functional. In the meantime, he is supported with anti-bacterial, anti-viral and anti-fungal medications. Once the doctors determine he is ready, he will receive all of the childhood vaccinations again. On average, that's a year out from transplant so we'll be keeping him as microbe free as possible until then.
Progress is painfully slow but there is progress. We are hoping to report in another month that appetite and exercise are improving. Thanks for your interest; we will update you after next week's dr. appointment.
Friday, November 23, 2012
11/23
We hope everyone had a wonderful Thanksgiving; we certainly got news for thanks. John's bone marrow biopsy results show complete engraftment of one of the stem cell donations; we don't know which one yet. And, there are no cancer cells in his marrow. This is exactly the result we have all been hoping for. There will be regular follow up doctor appointments and tests; this initial biopsy result is excellent, perfect and we are very thankful for these results.
We are also thankful for all of the good thoughts, prayers, positive vibrations you have been sending John's way; and for the phone calls, text messages and cards to lighten the mood through some trying times; for the days spent in the company of good friends - most recently Nancy, thank you! - and for the audiovisual equipment from a group of old friends and comrades in arms - you know who you are!
One of John's limitations is that he cannot be in rooms with live plants which means in our house he is limited to the bedroom, living room and bathroom. If you've never been here you might wonder why I don't just donate or rearrange a couple of houseplants so John can get to the rooms with the tv's. If you have ever been here, you know most of our house could double as a conservatory with uncountable numbers of plants some of which are bigger than any of us. John's most recent gift will eventually migrate out to his office (full of plants) but for the time being is set up in the living room so he can stay current with what is happening in the world. Too generous but so appreciated!
John's last dr appointment showed high potassium; he has to drink a vial (which is vile to him) every night of a medication that binds to the potassium to lower his levels. He had some blood work done this morning to test the potassium level. We are anxious to learn the results so we can discontinue that med tonight if possible.
In addition to our wonderful friends, we want to give a special shout out to our wonderful family this Thanksgiving weekend. We have been able to visit with the families of John's brother and cousin, the families of our children, and (via the phone) my family this week. Seeing our granddaughters has been a special treat and so far, no ill effects for John and his new immune system.
We are also thankful for all of the good thoughts, prayers, positive vibrations you have been sending John's way; and for the phone calls, text messages and cards to lighten the mood through some trying times; for the days spent in the company of good friends - most recently Nancy, thank you! - and for the audiovisual equipment from a group of old friends and comrades in arms - you know who you are!
One of John's limitations is that he cannot be in rooms with live plants which means in our house he is limited to the bedroom, living room and bathroom. If you've never been here you might wonder why I don't just donate or rearrange a couple of houseplants so John can get to the rooms with the tv's. If you have ever been here, you know most of our house could double as a conservatory with uncountable numbers of plants some of which are bigger than any of us. John's most recent gift will eventually migrate out to his office (full of plants) but for the time being is set up in the living room so he can stay current with what is happening in the world. Too generous but so appreciated!
John's last dr appointment showed high potassium; he has to drink a vial (which is vile to him) every night of a medication that binds to the potassium to lower his levels. He had some blood work done this morning to test the potassium level. We are anxious to learn the results so we can discontinue that med tonight if possible.
In addition to our wonderful friends, we want to give a special shout out to our wonderful family this Thanksgiving weekend. We have been able to visit with the families of John's brother and cousin, the families of our children, and (via the phone) my family this week. Seeing our granddaughters has been a special treat and so far, no ill effects for John and his new immune system.
Monday, November 19, 2012
11/20
We missed the one month anniversary of John's bone marrow transplant two days ago, November 18. It is hard to believe that one month ago, John had finished radiation, T-cell infusion, chemo to kill the T-cells and was having a day of "rest" in preparation for the transplant. Now, a month later, he is home and making steady progress. The fevers seem to have abated (knock on wood) even though we are in the midst of cold and flu season. Still tired and weak without much appetite or activity but we hope to report serious improvement in those areas a month from now. John's dr has said the prep and transplant would knock a 20 year old down so it seems John is doing at least as well as can be expected.
John hasn't been neutropenic since his original discharge but we did learn that most of his WBC count is neutrophils providing some very limited protection against bacterial infections but none against viral and fungal infections.
We had a wonderful weekend with Michael and Meredith and with John's brother, Bob, and sister-in-law, Sue. We are looking forward to a wonderful holiday weekend with Seth, Rebecca, Annabel, Eliza, Zacchary and Sharon. It will be a true Thanksgiving. Now if we can just find a way to have company and keep John's recovery on track...
Happy Thanksgiving, everyone!
John hasn't been neutropenic since his original discharge but we did learn that most of his WBC count is neutrophils providing some very limited protection against bacterial infections but none against viral and fungal infections.
We had a wonderful weekend with Michael and Meredith and with John's brother, Bob, and sister-in-law, Sue. We are looking forward to a wonderful holiday weekend with Seth, Rebecca, Annabel, Eliza, Zacchary and Sharon. It will be a true Thanksgiving. Now if we can just find a way to have company and keep John's recovery on track...
Happy Thanksgiving, everyone!
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