Thursday, October 20, 2011
100% Chimerism (Day +37)
Alex has 100% donor blood/marrow cells!!!! This is a tremendous milestone, and we are so excited for this great news!
Tuesday, October 18, 2011
A Milestone...Or Two (Day +35)
Life is moving at the speed of ... well, life!
We came home last Monday (10/10/11). It was a flurry of activity to get everything ready for Alex's homecoming. With the help of our wonderful friends and family, we were able to raise enough funds to pay for Alex's estimated medical care, and get our home ready for him.
With absolutely no *working* immune system, every bacteria, virus, or fungus, is a possible disaster. With this looming over us, we decided to replace our old, inefficient furnace with a new high-efficiency one with an incredible filtration system. Now, we can run the fan (drawing all the air through the filter), 24 hours a day without breaking the bank. We also were able to get all the ducting cleaned, so that this clean air is delivered to the vents and into our home. The last big item was the carpets. Since we went home sooner than expected, this item kept falling to the bottom of our list. But, with the carpets having to be done AT LEAST 24 hours before Alex could enter the home, we called around, and Oregon Chem-Dry was able to come out with less than 24 hours notice, and get the carpets clean.
Eric moved all the furniture off of the carpets on Friday night. On Saturday, after the carpets were cleaned, I came home, and started putting beds, and couches back together. With the help of our family, we were able to get the house almost completely put back together by the time I headed up the hill on Sunday morning. Eric continued the job of getting the house ready on Sunday night. Monday morning, Alex and I started packing, and Eric arrived to help us load up what turned out to be five red-wagon loads of "stuff" back to the car.
There was only one hitch... the doctors really wanted to get the "day 28" bone marrow aspiration before we left. It doesn't *have* to be done on day 28 - just "around" then. It is the first real milestone in this process.
The dilemma was the doctors would need to sedate him. Unfortunately, they had no idea what time an anesthesiologist would be available on Monday, and so, we had to have Alex NPO (which means no food by mouth) after midnight on Sunday, with no idea when he would actually go in. Since the doctors had prescribed an appetite stimulant to encourage food by mouth, this seemed like cruel and unusual punishment for a six year old. I made the executive decision to NOT give him the appetite stimulant that night, or the next morning.
We both slept hard, and were woken on Monday morning, with the news that a spot had opened up at 9:00 am, and that Alex would be sent to the sedation room in fifteen minutes. Alex was barely awake, and finished the procedure before Eric was able to get there. Watching the door close in my face, and my son is sent off into a Propofol fog is something I will never get used to. The doctors drilled a little hole in Alex's rear hip, to extract his marrow to determine four things:
1) Are there any leukemic cells present?
2) Are there any cells with the MLL chromosomal trans-location?
3) Is the marrow growing?
4) Is it the donor's marrow?
It took a week to find out the answers to three of the four questions. We hope to have an answer on the fourth on Thursday (crossing fingers and toes).
So...drum roll please...
1) There are absolutely NO leukemic cells present in the bone marrow sample!
2) There are absolutely NO cells with the MLL chromosomal trans-location!
3) The marrow cells are already at about 30-40% of the sample (normal is 50-60%). So YES, the cells are growing!
4) This is the one we are still waiting on. The doctors said before we left that they like to see at least 70% donor marrow on day 28. According to Alex's doctors today, they are anticipating 100% donor cells. We won't know for sure for a bit, but with the conditioning he received (the radiation and chemo), the doctors are very confident that his blood counts are reflective of a good donor graft!
Speaking of good counts... I wanted to explain some of the numbers I may use in the blog from time to time.
ANC - Absolute Neutrophil Count. This number was *very* important during Alex's treatment for Lymphoma. It determined whether we could go out in public, or school, or have to stay home. This is the number of a certain type of white blood cell, and the number determined his ability to use his immune system. Everything changed once the transplant was done. Now, his ANC is in the normal range (which is a good thing!), but the medications he is taking makes them useless right now. No matter what his ANC is right now, we are to act as if his ANC is zero.
BMT - Bone Marrow Transplant. Contrary to how it sounds, Alex did not have to have surgery for the transplant. The donor - on the other side of the world, went in, had her hips drilled over and over to collect the marrow. On the same day, that marrow was flown to Doerenbecher and processed. Then, the processed marrow was hung in a bag on an IV pole, and slowly dripped into his body. Since this new marrow is from a different person, there are reactions that are anticipated, and dealt with accordingly. The biggest issue is Graft Versus. Host Disease, which is being treated with a couple different medications.
GVHD - Graft Versus Host Disease. Alex's new immune system (the donor's), is recognizing Alex's old immune system as "foreign", and is attacking it. This is a good thing in small measures. There are even a few studies showing that patients who present with some GVHD after a BMT, are less likely to have their leukemia return. (I have read this, and heard it from the doctors, but would love to read the actual studies - and to see if any of them were with pediatric patients.) To counteract the GVHD, and allow his new immune system to fight off any remaining old cells (that could potentially be cancerous), Alex is on steroids, and another drug, which reduces the new immune systems ability ramp up for a major battle, letting his new immune system learn to "get along" with his body.
Prednisone - A steroid used to reduce the incidence of GVHD. We are slowly tapering Alex off of this medication, and if no new GVHD incidents erupt, we should be done with this medication by November 7th. This is also the steroid that makes Alex super hungry. (No need for an appetite stimulant anymore!)
Tacrolimus - A medication used to reduce the risk of Alex's body rejecting the new marrow. This level is monitored *very* closely, and once we are done tapering the steroids, we will probably start weaning Alex off the Tacrolimus as well. On his clinic days, Alex does not take his morning Tacrolimus dose until after he gets a blood draw to check how his body is metabolizing the drug.
Ursodiol - A medication used to protect the liver. This is a medication strictly to counteract some of the side effects of the other medications, and conditioning Alex received before the BMT. Alex will take this medication until at least day +90.
Acyclovir - Alex tested positive for herpes before his BMT (80% of the population tests positive), so while his immune system is suppressed, this medication is given to counteract any herpes virus that may have made it past the conditioning. It is also used as a general anti-viral medication for BMT patients.
Voriconazole - This is a broad-spectrum anti-fungal medication that Alex will take until at least day +75.
Omeprazole - This is heart-burn medication used to help Alex with the Prednisone (which can be hard on the stomach. He will take this until he is done with the steroid.
Trimethoprim/sulfamethoxazole - Also known as Septra. This is an antibiotic to ward against a common strain of pneumonia that is common in immune compromised people. We take this only on the weekends as a preventative measure.
All of these medications are given at least once (most twice) a day. They are all sizes of pills, and capsules. Alex takes them all individually with apple sauce. Alex is doing tremendously well - he is eating a whole lot - so, we have avoided having to use the feeding tube (one less thing to worry about). Our biggest struggle right now is the amount of liquid he is supposed to have per day (anything that is liquid at room temperature counts, i.e. ice cream). He is supposed to drink 52 ounces of water a day. So far, on a good day, nagging him *constantly* we are getting only 30-40 ounces.
The hardest thing for us as a family right now (especially me and Alex) is feeling so disconnected from everything. Friends must be completely healthy and have a flu shot before they can play. So far, only one kid has met that requirement, and played with Alex.
We are working on a new routine, keeping Alex away from so many germs...it is enough to drive anyone crazy. I'm afraid I am just about there...
We came home last Monday (10/10/11). It was a flurry of activity to get everything ready for Alex's homecoming. With the help of our wonderful friends and family, we were able to raise enough funds to pay for Alex's estimated medical care, and get our home ready for him.
With absolutely no *working* immune system, every bacteria, virus, or fungus, is a possible disaster. With this looming over us, we decided to replace our old, inefficient furnace with a new high-efficiency one with an incredible filtration system. Now, we can run the fan (drawing all the air through the filter), 24 hours a day without breaking the bank. We also were able to get all the ducting cleaned, so that this clean air is delivered to the vents and into our home. The last big item was the carpets. Since we went home sooner than expected, this item kept falling to the bottom of our list. But, with the carpets having to be done AT LEAST 24 hours before Alex could enter the home, we called around, and Oregon Chem-Dry was able to come out with less than 24 hours notice, and get the carpets clean.
Eric moved all the furniture off of the carpets on Friday night. On Saturday, after the carpets were cleaned, I came home, and started putting beds, and couches back together. With the help of our family, we were able to get the house almost completely put back together by the time I headed up the hill on Sunday morning. Eric continued the job of getting the house ready on Sunday night. Monday morning, Alex and I started packing, and Eric arrived to help us load up what turned out to be five red-wagon loads of "stuff" back to the car.
There was only one hitch... the doctors really wanted to get the "day 28" bone marrow aspiration before we left. It doesn't *have* to be done on day 28 - just "around" then. It is the first real milestone in this process.
The dilemma was the doctors would need to sedate him. Unfortunately, they had no idea what time an anesthesiologist would be available on Monday, and so, we had to have Alex NPO (which means no food by mouth) after midnight on Sunday, with no idea when he would actually go in. Since the doctors had prescribed an appetite stimulant to encourage food by mouth, this seemed like cruel and unusual punishment for a six year old. I made the executive decision to NOT give him the appetite stimulant that night, or the next morning.
We both slept hard, and were woken on Monday morning, with the news that a spot had opened up at 9:00 am, and that Alex would be sent to the sedation room in fifteen minutes. Alex was barely awake, and finished the procedure before Eric was able to get there. Watching the door close in my face, and my son is sent off into a Propofol fog is something I will never get used to. The doctors drilled a little hole in Alex's rear hip, to extract his marrow to determine four things:
1) Are there any leukemic cells present?
2) Are there any cells with the MLL chromosomal trans-location?
3) Is the marrow growing?
4) Is it the donor's marrow?
It took a week to find out the answers to three of the four questions. We hope to have an answer on the fourth on Thursday (crossing fingers and toes).
So...drum roll please...
1) There are absolutely NO leukemic cells present in the bone marrow sample!
2) There are absolutely NO cells with the MLL chromosomal trans-location!
3) The marrow cells are already at about 30-40% of the sample (normal is 50-60%). So YES, the cells are growing!
4) This is the one we are still waiting on. The doctors said before we left that they like to see at least 70% donor marrow on day 28. According to Alex's doctors today, they are anticipating 100% donor cells. We won't know for sure for a bit, but with the conditioning he received (the radiation and chemo), the doctors are very confident that his blood counts are reflective of a good donor graft!
Speaking of good counts... I wanted to explain some of the numbers I may use in the blog from time to time.
ANC - Absolute Neutrophil Count. This number was *very* important during Alex's treatment for Lymphoma. It determined whether we could go out in public, or school, or have to stay home. This is the number of a certain type of white blood cell, and the number determined his ability to use his immune system. Everything changed once the transplant was done. Now, his ANC is in the normal range (which is a good thing!), but the medications he is taking makes them useless right now. No matter what his ANC is right now, we are to act as if his ANC is zero.
BMT - Bone Marrow Transplant. Contrary to how it sounds, Alex did not have to have surgery for the transplant. The donor - on the other side of the world, went in, had her hips drilled over and over to collect the marrow. On the same day, that marrow was flown to Doerenbecher and processed. Then, the processed marrow was hung in a bag on an IV pole, and slowly dripped into his body. Since this new marrow is from a different person, there are reactions that are anticipated, and dealt with accordingly. The biggest issue is Graft Versus. Host Disease, which is being treated with a couple different medications.
GVHD - Graft Versus Host Disease. Alex's new immune system (the donor's), is recognizing Alex's old immune system as "foreign", and is attacking it. This is a good thing in small measures. There are even a few studies showing that patients who present with some GVHD after a BMT, are less likely to have their leukemia return. (I have read this, and heard it from the doctors, but would love to read the actual studies - and to see if any of them were with pediatric patients.) To counteract the GVHD, and allow his new immune system to fight off any remaining old cells (that could potentially be cancerous), Alex is on steroids, and another drug, which reduces the new immune systems ability ramp up for a major battle, letting his new immune system learn to "get along" with his body.
Prednisone - A steroid used to reduce the incidence of GVHD. We are slowly tapering Alex off of this medication, and if no new GVHD incidents erupt, we should be done with this medication by November 7th. This is also the steroid that makes Alex super hungry. (No need for an appetite stimulant anymore!)
Tacrolimus - A medication used to reduce the risk of Alex's body rejecting the new marrow. This level is monitored *very* closely, and once we are done tapering the steroids, we will probably start weaning Alex off the Tacrolimus as well. On his clinic days, Alex does not take his morning Tacrolimus dose until after he gets a blood draw to check how his body is metabolizing the drug.
Ursodiol - A medication used to protect the liver. This is a medication strictly to counteract some of the side effects of the other medications, and conditioning Alex received before the BMT. Alex will take this medication until at least day +90.
Acyclovir - Alex tested positive for herpes before his BMT (80% of the population tests positive), so while his immune system is suppressed, this medication is given to counteract any herpes virus that may have made it past the conditioning. It is also used as a general anti-viral medication for BMT patients.
Voriconazole - This is a broad-spectrum anti-fungal medication that Alex will take until at least day +75.
Omeprazole - This is heart-burn medication used to help Alex with the Prednisone (which can be hard on the stomach. He will take this until he is done with the steroid.
Trimethoprim/sulfamethoxazole - Also known as Septra. This is an antibiotic to ward against a common strain of pneumonia that is common in immune compromised people. We take this only on the weekends as a preventative measure.
All of these medications are given at least once (most twice) a day. They are all sizes of pills, and capsules. Alex takes them all individually with apple sauce. Alex is doing tremendously well - he is eating a whole lot - so, we have avoided having to use the feeding tube (one less thing to worry about). Our biggest struggle right now is the amount of liquid he is supposed to have per day (anything that is liquid at room temperature counts, i.e. ice cream). He is supposed to drink 52 ounces of water a day. So far, on a good day, nagging him *constantly* we are getting only 30-40 ounces.
The hardest thing for us as a family right now (especially me and Alex) is feeling so disconnected from everything. Friends must be completely healthy and have a flu shot before they can play. So far, only one kid has met that requirement, and played with Alex.
We are working on a new routine, keeping Alex away from so many germs...it is enough to drive anyone crazy. I'm afraid I am just about there...
Monday, October 10, 2011
Going Home (Day +27)
Yes. We are packing up, as I type this...
I have lots to tell everyone, and once we are settled back at home, I will get you all up to date!!!!
I have lots to tell everyone, and once we are settled back at home, I will get you all up to date!!!!
Thursday, October 6, 2011
A Curious Case Of The Sneezers (Day +23)
I know it has been a while since I have posted. Medically, things are moving in the right direction. Alex's white cells and red cells continue to grow and multiply, and he hasn't needed a transfusion in quite a few days.
He did start to show a bit of a rash on his arms and neck again, so the decision was made to put him on steroids (although only a half-dose), to help his body and new immune system try to get along.
The number of active pumps and tubes going into his body has reduced, as his mouth sores have vanished, and he can start to take more medications by mouth.
We have also weened him off of his TPN and Lipids (the IV nutrition), and gave him an appetite stimulant. It seems that he has rounded the bend, and is starting to eat and drink without the nausea that plagued his earlier attempts. Today, he has eaten three individual boxes of cereal, and some pasta noodles, some milk, and a Nutragrain cereal bar, and it is only 2:30!
So, we have been moving right along, hoping to blow this joint next week. The main focus now is getting his caloric and liquid high enough without IV support, to sustain him at home. Each day we are replacing another IV medication with an oral version. He still has a bit of a struggle with wanting to take them. The memory of his nausea, and not being able to keep down a pill is still clear in his mind. We hope that with each successful dose, he will be positively reinforced, and we will reduce the number of battles over oral medications.
Yesterday afternoon Alex started sneezing. At first, it was just every once in a while, and then it grew more and more frequent as the evening progressed. He would grab a tissue each time he sneezed, but there wasn't a lot of "stuff" to wipe. I started getting nervous that he might be coming down with some type of cold. The nurses and doctors took note, and reassured me that he was already on anti-virals, antibiotics, and anti-fungals, so they were just going to watch and see what he did.
About 7pm, Alex took his appetite stimulant, and started to get interested in food. By 9pm, he was asking for a big slice of pepperoni pizza (which had been graciously provided by Candelighters earlier that evening). Alex ate that piece within 20 minutes, and hasn't sneezed since.
All night, and all day today, the sneezes have been absent. No runny nose, no cough, no lethargy. So, it seems that pepperoni pizza is a cure for the sneezers - who'da thunk?
Realistically, it could have been something in the air, who knows, obviously pepperoni doesn't cure sneezes, but it has been a fun story to tell!
He did start to show a bit of a rash on his arms and neck again, so the decision was made to put him on steroids (although only a half-dose), to help his body and new immune system try to get along.
The number of active pumps and tubes going into his body has reduced, as his mouth sores have vanished, and he can start to take more medications by mouth.
We have also weened him off of his TPN and Lipids (the IV nutrition), and gave him an appetite stimulant. It seems that he has rounded the bend, and is starting to eat and drink without the nausea that plagued his earlier attempts. Today, he has eaten three individual boxes of cereal, and some pasta noodles, some milk, and a Nutragrain cereal bar, and it is only 2:30!
So, we have been moving right along, hoping to blow this joint next week. The main focus now is getting his caloric and liquid high enough without IV support, to sustain him at home. Each day we are replacing another IV medication with an oral version. He still has a bit of a struggle with wanting to take them. The memory of his nausea, and not being able to keep down a pill is still clear in his mind. We hope that with each successful dose, he will be positively reinforced, and we will reduce the number of battles over oral medications.
Yesterday afternoon Alex started sneezing. At first, it was just every once in a while, and then it grew more and more frequent as the evening progressed. He would grab a tissue each time he sneezed, but there wasn't a lot of "stuff" to wipe. I started getting nervous that he might be coming down with some type of cold. The nurses and doctors took note, and reassured me that he was already on anti-virals, antibiotics, and anti-fungals, so they were just going to watch and see what he did.
About 7pm, Alex took his appetite stimulant, and started to get interested in food. By 9pm, he was asking for a big slice of pepperoni pizza (which had been graciously provided by Candelighters earlier that evening). Alex ate that piece within 20 minutes, and hasn't sneezed since.
All night, and all day today, the sneezes have been absent. No runny nose, no cough, no lethargy. So, it seems that pepperoni pizza is a cure for the sneezers - who'da thunk?
Realistically, it could have been something in the air, who knows, obviously pepperoni doesn't cure sneezes, but it has been a fun story to tell!
Wednesday, October 5, 2011
Warriors 4 Alex
On Saturday, we walked for Alex, we walked to help raise money for a cure for blood cancers.
We walked with over 60 Warriors. It was a great night...
I had the honor of talking about Alex, and our struggles. I was nervous, but think I said all I had in my notes. I was humbled to see how many people were there.
I was surprised that the MC for the night was Jolynn Winter, who used to be our neighbor. She knew of Alex's original diagnosis, but did not realize that he was the same Alex that was the honored hero for this year's Light The Night. Her heartfelt introduction before my short speech meant a lot to me.
Alaska Airlines gave us some wrist bands that said "Won't Back Down" on them, and we were very touched that they thought so much of our boy. Another team, the Myeloma Mashers is working with our team captain, Melissa on a fundraiser to finish off the fundraising year. Even Dutch Bros. in Beaverton has joined in with a fundraising day for us later this month.
Eric and Alex stayed up at Doerenbecher, while Tessa and I joined the rest of the walkers at the convention center. I really missed both of them. Alex was really upset that he couldn't go. However, Eric got permission for Alex to leave the ward so he could see the fireworks!
The rain stayed away, and we enjoyed a beautiful night, with a fireworks show. Tessa LOVED the fireworks. We even got to lead the walk, and started with Tom Petty's "Won't Back Down" - Alex's battle cry.
I didn't get to spend a whole lot of time with many of the people who came for the walk. I wish that I had time to properly thank ALL of you for your dedication, and support of our family.
I treasure the memory of that night, and will be back next year, with Alex and Eric joining us.
We walked with over 60 Warriors. It was a great night...
I had the honor of talking about Alex, and our struggles. I was nervous, but think I said all I had in my notes. I was humbled to see how many people were there.
I was surprised that the MC for the night was Jolynn Winter, who used to be our neighbor. She knew of Alex's original diagnosis, but did not realize that he was the same Alex that was the honored hero for this year's Light The Night. Her heartfelt introduction before my short speech meant a lot to me.
Alaska Airlines gave us some wrist bands that said "Won't Back Down" on them, and we were very touched that they thought so much of our boy. Another team, the Myeloma Mashers is working with our team captain, Melissa on a fundraiser to finish off the fundraising year. Even Dutch Bros. in Beaverton has joined in with a fundraising day for us later this month.
Eric and Alex stayed up at Doerenbecher, while Tessa and I joined the rest of the walkers at the convention center. I really missed both of them. Alex was really upset that he couldn't go. However, Eric got permission for Alex to leave the ward so he could see the fireworks!
The rain stayed away, and we enjoyed a beautiful night, with a fireworks show. Tessa LOVED the fireworks. We even got to lead the walk, and started with Tom Petty's "Won't Back Down" - Alex's battle cry.
I didn't get to spend a whole lot of time with many of the people who came for the walk. I wish that I had time to properly thank ALL of you for your dedication, and support of our family.
I treasure the memory of that night, and will be back next year, with Alex and Eric joining us.
Monday, October 3, 2011
Blocked
Alex is doing well... a bit of a rash, which is being treated with steroids. I have so much to say... about the Light The Night Walk, about what has been going on these last few days, but I am blocked. Maybe I will feel like writing tomorrow.
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