I just wanted to let you know that Matthew is DONE with his Rotiximab treatments!! We have officially completed everything the transplant team has tried to do in an attempt to reverse or treat some of the coronary artery disease we discovered just about six weeks ago.
Matthew is scheduled for a full heart catheterization and biopsy this Thursday, December 1st. I am super nervous. Either the treatments worked and we were able to buy some more time, or the treatments did not work and we will be going through the process to re-list Matthew for another heart transplant. I will keep you posted when we find out the results of the cath.
Until then, I sincerely appreciate your support! Your comments, prayers, and thoughts all strengthen me more than you know! Please remember Matthew and his physicians in your prayers this Thursday!
Monday, November 28, 2011
Saturday, November 12, 2011
Gratitude
One Tuesday down, two more to go! We started off the day at 7:45 am getting bloodwork and an IV placed. Then we had an echocardiogram and cardiology appointments. At our cardiology visit, Dr. Everitt said Matthew's filling pressures on his echo would suggest that his heart may be getting worse. Also, Matthew has had this very faint heart gallop in the past that only Dr. Everitt and a few others could hear. Well, on Monday night when I was taking Matthew's vitals and listening to his heart- I heard the gallop very clearly. In fact, it kind of scared me because it sounded so different than what I was used to hearing. I had Matt listen as well and Matt said that what I was hearing was the heart gallop. Because of these things and some other clinical findings at our appointment we went up some more on the Lasix to try to help remove some of the extra fluid. Dr. Everitt's impression was that all these treatments (plasmapheresis, rotiximab infusions, etc) may not be working. However, she wanted to wait for a week to re-evaluate things before moving up Matthew's heart catheterization. I am still hopeful that the treatments can kick in soon and will be effective in helping things improve. I guess this next Tuesday will be telling. If things continue to decline, we will most likely be doing the heart cath next week.
After we were done with cardiology, we went to Hematology/Oncology to their infusion clinic and started Matthew's Rotuximab. This was a first for me. The Oncology section of the hospital was a place I never imagined me and sweet little Matthew needing to be! It is a very sad place. There are about 8 very, very small curtained areas where children are getting chemotherapy infusions. Babies, teenagers, and everything in between- all of them being treated for some kind of cancer I'm assuming. Kids falling asleep in recliners, sweet bald heads- all trying to pass the time as the iv infusion slowly dripped, dripped, dripped... Matthew deals very well with all kinds of things except for hearing another child in pain or upset. There were a couple of babies on Tuesday who were crying. Matthew is very sensitive to this. He became quite concerned and then got upset himself. Tuesday was the first time I have ever heard Matthew say "I hate this hospital!! I want to go home right now!" Physically, Matthew tolerated this infusion better than the first one he received in the hospital. His heart rate remained stable and he didn't get a migrane. We only have two more of these infusions left. Obviously Matthew doesn't have cancer, but Rotuximab is classified as a chemotherapy drug that cardiology is using to give Matthew some good antibodies to protect against lymphoma- since he is immune suppressed and we just stripped away all of his antibodies. Lymphoma has been a scare for us with Matthew in the past and something the medical team continues to watch very closely.
Maybe I'm delusional, or maybe just a mother protectively guarding her emotions. But sometimes I just don't think of Matthew as being the sickly type. For those of you who see him you can attest that he looks like a completely healthy, happy child. Sometimes I focus on that and not so much all the details of what is going on medically. When we were on the Oncology floor one of the child life specialists approached me about starting to collect a "Colors of Courage" necklace for Matthew. She said, although Matthew is not a cancer patient, he's been through quite a bit and this program could probably apply to him as well. I skeptically looked at the list of all the procedures, infusions, surgeries, etc that cancer patients undergo to "collect" beads for their necklace as sort of a documentary and acknowledgement of what they've experienced medically in their life. Much to my surprise, Matthew has undergone 25 of the 30 things on this list- some of these things he's repeated 20 to 100 or more times. Maybe seeing all the beads on a necklace or seeing everything he's been through on a list compared to cancer patients made me realize- Matthew really is very sick!! I know this probably sounds silly, but sometimes going through the motions and not dealing with reality is the only way a mother can survive something like this. I guess I was brought back to reality. :(
Since it's November and Thanksgiving is only weeks away, I wanted to express my gratitude to my parents. Many of you may not know that my Mom and Dad have always wanted to serve an LDS mission. Their plans were delayed when Matthew was sick and had his heart transplant. At Matthew's annual heart cath and biopsy when things looked so great- we all thought the biospy marked a new beginning for easier and improved circumstances with Matthew. It was at this time that my parents submitted their mission papers and received a call to serve in the Warsaw, Poland mission. They were so excited!! They got busy preparing to serve and learning all they could about the Polish language and culture. About two weeks before they were to leave, we found out that Matthew was in rejection. We still didn't think this was a big deal. Matthew has had several episodes of rejection and we felt confident that he would overcome this episode triumphantly like he had past episodes. It wasn't until my parents left for Poland that things really got crazy. When we found out Matthew had coronary artery disease and discovered the reality and implications of this disease my parents prayerfully met with their mission president and was told by President Nielson that my parents mission was not to be in Poland that they were needed in Utah. They have not been released yet, we are waiting to see what happens in these next couple of months. However, they take their mission very seriously and have been a tremendous help in Utah and particularly with Matthew and myself! One of the great gifts that my Mom has is that she makes you feel like when she's with you there is honestly no other place she would rather be- even if that is on the oncology floor behind a curtain in a cramped area. I honestly don't know how I could do all of this without them. I am grateful for their sacrafice and delay of a life long dream once again- even though I felt really guilty for a long time. I know that they honestly feel like they are where the Lord wants them to be at this time.
I am also incredibly grateful for my Mother and Father in law who have been equally helpful. I feel really lucky to have a wonderful relationship with my in-laws. My mother in law has been dealing with some medical issues of her own, but always puts her own needs aside to do anything in her power to express her love and support to our family. She is one of the most selfless people I know and I love her very much. I also worry about her a lot! Sometimes I feel like I need to protect her so that she will take care of herself. I hope she knows how much she is loved and appreiciated!
Even amidst the trials in this life blessings can be found if you open your eyes to all that the Lord has blessed each and every one of us with. I truly am grateful for the blessing of family- immediate and extended. I think the Lord gave me the best on both sides! For this, I truly am eternally grateful!
After we were done with cardiology, we went to Hematology/Oncology to their infusion clinic and started Matthew's Rotuximab. This was a first for me. The Oncology section of the hospital was a place I never imagined me and sweet little Matthew needing to be! It is a very sad place. There are about 8 very, very small curtained areas where children are getting chemotherapy infusions. Babies, teenagers, and everything in between- all of them being treated for some kind of cancer I'm assuming. Kids falling asleep in recliners, sweet bald heads- all trying to pass the time as the iv infusion slowly dripped, dripped, dripped... Matthew deals very well with all kinds of things except for hearing another child in pain or upset. There were a couple of babies on Tuesday who were crying. Matthew is very sensitive to this. He became quite concerned and then got upset himself. Tuesday was the first time I have ever heard Matthew say "I hate this hospital!! I want to go home right now!" Physically, Matthew tolerated this infusion better than the first one he received in the hospital. His heart rate remained stable and he didn't get a migrane. We only have two more of these infusions left. Obviously Matthew doesn't have cancer, but Rotuximab is classified as a chemotherapy drug that cardiology is using to give Matthew some good antibodies to protect against lymphoma- since he is immune suppressed and we just stripped away all of his antibodies. Lymphoma has been a scare for us with Matthew in the past and something the medical team continues to watch very closely.
Maybe I'm delusional, or maybe just a mother protectively guarding her emotions. But sometimes I just don't think of Matthew as being the sickly type. For those of you who see him you can attest that he looks like a completely healthy, happy child. Sometimes I focus on that and not so much all the details of what is going on medically. When we were on the Oncology floor one of the child life specialists approached me about starting to collect a "Colors of Courage" necklace for Matthew. She said, although Matthew is not a cancer patient, he's been through quite a bit and this program could probably apply to him as well. I skeptically looked at the list of all the procedures, infusions, surgeries, etc that cancer patients undergo to "collect" beads for their necklace as sort of a documentary and acknowledgement of what they've experienced medically in their life. Much to my surprise, Matthew has undergone 25 of the 30 things on this list- some of these things he's repeated 20 to 100 or more times. Maybe seeing all the beads on a necklace or seeing everything he's been through on a list compared to cancer patients made me realize- Matthew really is very sick!! I know this probably sounds silly, but sometimes going through the motions and not dealing with reality is the only way a mother can survive something like this. I guess I was brought back to reality. :(
Since it's November and Thanksgiving is only weeks away, I wanted to express my gratitude to my parents. Many of you may not know that my Mom and Dad have always wanted to serve an LDS mission. Their plans were delayed when Matthew was sick and had his heart transplant. At Matthew's annual heart cath and biopsy when things looked so great- we all thought the biospy marked a new beginning for easier and improved circumstances with Matthew. It was at this time that my parents submitted their mission papers and received a call to serve in the Warsaw, Poland mission. They were so excited!! They got busy preparing to serve and learning all they could about the Polish language and culture. About two weeks before they were to leave, we found out that Matthew was in rejection. We still didn't think this was a big deal. Matthew has had several episodes of rejection and we felt confident that he would overcome this episode triumphantly like he had past episodes. It wasn't until my parents left for Poland that things really got crazy. When we found out Matthew had coronary artery disease and discovered the reality and implications of this disease my parents prayerfully met with their mission president and was told by President Nielson that my parents mission was not to be in Poland that they were needed in Utah. They have not been released yet, we are waiting to see what happens in these next couple of months. However, they take their mission very seriously and have been a tremendous help in Utah and particularly with Matthew and myself! One of the great gifts that my Mom has is that she makes you feel like when she's with you there is honestly no other place she would rather be- even if that is on the oncology floor behind a curtain in a cramped area. I honestly don't know how I could do all of this without them. I am grateful for their sacrafice and delay of a life long dream once again- even though I felt really guilty for a long time. I know that they honestly feel like they are where the Lord wants them to be at this time.
I am also incredibly grateful for my Mother and Father in law who have been equally helpful. I feel really lucky to have a wonderful relationship with my in-laws. My mother in law has been dealing with some medical issues of her own, but always puts her own needs aside to do anything in her power to express her love and support to our family. She is one of the most selfless people I know and I love her very much. I also worry about her a lot! Sometimes I feel like I need to protect her so that she will take care of herself. I hope she knows how much she is loved and appreiciated!
Even amidst the trials in this life blessings can be found if you open your eyes to all that the Lord has blessed each and every one of us with. I truly am grateful for the blessing of family- immediate and extended. I think the Lord gave me the best on both sides! For this, I truly am eternally grateful!
Saturday, November 5, 2011
Home again!
Matthew got home from the hospital on Thursday, November 3rd. It was SO nice to get him home! 10 days in the hospital with a three year old is exhausting! Especially when he is immune suppressed and cannot participate in a lot of the activities the hospital provides for hospitalized children. His hospital room quickly transformed into a a playroom. We brought suitcases of toys and good friends and aunts and uncles visited and brought him other fun things to keep him busy! Thank you so much- all of you!! The highlight of the stay for Matthew was a whoopie cushion brought by his Aunt Ashley and Uncle Ben. Matthew became known as the prankster who played tricks on all the nurses, doctors, and tech's. Once again, everybody who spent even a minute with Matthew learned to love him quickly! The cleaning lady, foodservice delivery ladies, nurses, and everybody on the floor loved to be around Matthew's charming and fun personality. It is effortless to love Matthew. This gift evidenced itself once again during our hospital stay!
He tolerated the five treatments of plasmapheresis well. "Napoleon" was the name of the dialysis machine that would visit Matthew every other day to filter out Matthew's plasma. It was wierd seeing this machine in action. I tried not to think about too many details during the process. Watching his blood being drained from his body, run through a filter and then watching the fresh frozen plasma and albumen being added back into his blood was a little intense. I'm glad it's over! We won't know if these treatments were effective until his next heart catheterization and biospy. This is scheduled for December 1st, however, it could be moved up if cardiology feels a need to do so.
Until December 1st, Matthew will have weekly appointments and Rotuximab infusions every Tuesday. These will be VERY long days!! They start with a blood draw and IV placement in the early morning following by an echocardiogram, usually and ECG, and cardiology doctor appointments. Then we will go upstairs to the oncology floor to their infusion clinic to receive the Rotuximab which I think will take about 2 hours or maybe longer. As it was explanined to me, these infusion treatments are necessary to give back some very specific antibodies that were taken away during the plasmapheresis process. Cardiology wants Matthew to have the good antibodies that will help fight off things like CMV and EBV so that those viruses don't become an issue later on.
Matt and I met with the two transplant cardiologists, the social worker, one of the transplant nurses, and a hospice nurse yesterday in a question/answer session to help us start getting prepared for decisions that will need to be made in the future. The information we received was not surprising, by any means, but was still hard to hear nonetheless. The research shows that transplant recipients with coronary artery disease will not survive two years out from diagnosis. Coronary artery disease is responsible for 50% of re-transplants and is the number one killer of transplant patients who are at least one year out from transplant. We are not sure how quickly this disease is progressing in Matthew, but Dr. Everitt told us that she would categorize his CAD as "severe" and he didn't have any signs of it in April. Our assumption is that it is progressing quickly. We are hopeful that the plasmapheresis treatments slowed, or maybe even reversed some of the damage already done. However, even as a best case scenario, plasmapheresis is not a cure for CAD. It would only buy us a little more time- how much time? We are not sure. If at his heart cath things do not look improved, we will re-list him for another heart. I think Matt and I feel like we need to move forward with treatment as long as Matthew is acting healthy and is happy during the process. Our decision can always change. The statistics for a re-transplant are not very encouraging either. There are only 39 patients internationally who have been in Matthew's situation- less than three years out from transplant and in need of a new heart. Whether or not he will get a new heart is a big question. Whereas before Matthew was eligible for 75% of hearts in his blood type, because of the antibodies Matthew has developed over the passed year and a half, Matthew is now only eligible 33% of hearts within his blood type. The statistics among those 39 patients who have been involved in the study (who actually received a 2nd heart), 80% lived beyond the first year and only 50% lived to five years. There's not much data out there beyond that because re-transplant is very new in children. Have I lost you yet? I know a lot of numbers that don't mean much unless you stew over them day and night feeling totally responsible for making the right decision for your child!
So, there you have it! The update. It really is much easier to update everybody this way. It's hard to talk about these things. Matthew is getting older and is understanding more and more. He's always with me making it harder for me to talk to everybody on the phone for updates. This is a tricky subject- life and death when it is so personal and when children are involved. I would ask that you all please be sensitive in your conversations around Joshua and Luke. They are aware of the situation. We have tried to be very open and honest with them always. In fact, when we were in Florida we went to the Orlando temple grounds on Sunday and had a family devotional where we discussed what was happening and the reasons why we were in Florida as a family to enjoy time with each other. It is not easy. Obviously Joshua understands the most. I have had some very difficult and tearful conversations with him. I would hate to have any of my children hear discussions being had by other adults about the reality of their little brother! I would much rather they hear things from me. I appreciate your understanding of this.
Amidst all of this, we really do feel blessed! We have a wonderful family and we have been given the gift of time with Matthew. I can honestly say without any regrets, that I would not change a thing! I have tried to love him and enjoy him as much as I can every day. We have tried to provide family opportunities where we can build positive memories. We have tried to have a home where love can be felt by all of our children. Matthew is happy and he knows, without question, that he is loved!
Hard times, lie ahead. I don't know if I'm ready for whatever is going to happen. Matt and I will fight for Matthew until we feel like it's time for him to go home. I pray for spiritual strength for myself and my entire family. I find myself starting to turn things over to the Lord more and try to have faith in his plan for Matthew! I'm not sure what this means. Please keep the prayers coming! We need them now, more than ever!!
He tolerated the five treatments of plasmapheresis well. "Napoleon" was the name of the dialysis machine that would visit Matthew every other day to filter out Matthew's plasma. It was wierd seeing this machine in action. I tried not to think about too many details during the process. Watching his blood being drained from his body, run through a filter and then watching the fresh frozen plasma and albumen being added back into his blood was a little intense. I'm glad it's over! We won't know if these treatments were effective until his next heart catheterization and biospy. This is scheduled for December 1st, however, it could be moved up if cardiology feels a need to do so.
Until December 1st, Matthew will have weekly appointments and Rotuximab infusions every Tuesday. These will be VERY long days!! They start with a blood draw and IV placement in the early morning following by an echocardiogram, usually and ECG, and cardiology doctor appointments. Then we will go upstairs to the oncology floor to their infusion clinic to receive the Rotuximab which I think will take about 2 hours or maybe longer. As it was explanined to me, these infusion treatments are necessary to give back some very specific antibodies that were taken away during the plasmapheresis process. Cardiology wants Matthew to have the good antibodies that will help fight off things like CMV and EBV so that those viruses don't become an issue later on.
Matt and I met with the two transplant cardiologists, the social worker, one of the transplant nurses, and a hospice nurse yesterday in a question/answer session to help us start getting prepared for decisions that will need to be made in the future. The information we received was not surprising, by any means, but was still hard to hear nonetheless. The research shows that transplant recipients with coronary artery disease will not survive two years out from diagnosis. Coronary artery disease is responsible for 50% of re-transplants and is the number one killer of transplant patients who are at least one year out from transplant. We are not sure how quickly this disease is progressing in Matthew, but Dr. Everitt told us that she would categorize his CAD as "severe" and he didn't have any signs of it in April. Our assumption is that it is progressing quickly. We are hopeful that the plasmapheresis treatments slowed, or maybe even reversed some of the damage already done. However, even as a best case scenario, plasmapheresis is not a cure for CAD. It would only buy us a little more time- how much time? We are not sure. If at his heart cath things do not look improved, we will re-list him for another heart. I think Matt and I feel like we need to move forward with treatment as long as Matthew is acting healthy and is happy during the process. Our decision can always change. The statistics for a re-transplant are not very encouraging either. There are only 39 patients internationally who have been in Matthew's situation- less than three years out from transplant and in need of a new heart. Whether or not he will get a new heart is a big question. Whereas before Matthew was eligible for 75% of hearts in his blood type, because of the antibodies Matthew has developed over the passed year and a half, Matthew is now only eligible 33% of hearts within his blood type. The statistics among those 39 patients who have been involved in the study (who actually received a 2nd heart), 80% lived beyond the first year and only 50% lived to five years. There's not much data out there beyond that because re-transplant is very new in children. Have I lost you yet? I know a lot of numbers that don't mean much unless you stew over them day and night feeling totally responsible for making the right decision for your child!
So, there you have it! The update. It really is much easier to update everybody this way. It's hard to talk about these things. Matthew is getting older and is understanding more and more. He's always with me making it harder for me to talk to everybody on the phone for updates. This is a tricky subject- life and death when it is so personal and when children are involved. I would ask that you all please be sensitive in your conversations around Joshua and Luke. They are aware of the situation. We have tried to be very open and honest with them always. In fact, when we were in Florida we went to the Orlando temple grounds on Sunday and had a family devotional where we discussed what was happening and the reasons why we were in Florida as a family to enjoy time with each other. It is not easy. Obviously Joshua understands the most. I have had some very difficult and tearful conversations with him. I would hate to have any of my children hear discussions being had by other adults about the reality of their little brother! I would much rather they hear things from me. I appreciate your understanding of this.
Amidst all of this, we really do feel blessed! We have a wonderful family and we have been given the gift of time with Matthew. I can honestly say without any regrets, that I would not change a thing! I have tried to love him and enjoy him as much as I can every day. We have tried to provide family opportunities where we can build positive memories. We have tried to have a home where love can be felt by all of our children. Matthew is happy and he knows, without question, that he is loved!
Hard times, lie ahead. I don't know if I'm ready for whatever is going to happen. Matt and I will fight for Matthew until we feel like it's time for him to go home. I pray for spiritual strength for myself and my entire family. I find myself starting to turn things over to the Lord more and try to have faith in his plan for Matthew! I'm not sure what this means. Please keep the prayers coming! We need them now, more than ever!!
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