Its been a couple days since we posted so I thought I would write a little something...
This weekend has been really fun! We spent most of it with friends and family. We played games and kinda just hung out. It was great!
We were released from our calling today as the nursery leaders and we were a little more emotional about it than I thought we would be. Most people would probably be rejoicing... we were sad... I guess we are just weird :)
I want to thank everyone again for all the support! We have been amazed by the many acts of kindness, generosity and service that have been so selflessly given. Whether its a phone call or comment, coming to appointments, bringing dinner, or in some cases shaving your head for support (Jason). We are so blessed to have so many incredible people in our lives. I can assure you this trial has given us a different outlook on life, and I know we will be better people because of it.
Robert has his appointment on Tuesday. We are both anxious and excited to get things started so we can get Robert on the road to remission. Once we find out what the game plan is we will let you all know. Please keep the prayers coming, they are still needed!
Lots of love!
Crystal
Sunday, February 28, 2010
Wednesday, February 24, 2010
Postponed
Today we had a follow up appointment for Roberts surgery he had last week. The doc removed his bandage and says everything is looking good. He has some numbness and swelling but we were told that is normal.
It turns out he won't be starting Chemotherapy tomorrow. I guess the doctor had to send the biopsy to University of Michigan for another opinion. They can't start the treatments until they know exactly what it is and they have not heard back yet. After they find out what it is they need to get authorization from our insurance company. Its going to be a few days for them to get all that done. So they pushed back tomorrows appointment to Tuesday morning. Its alright though we're going to try and be patient and enjoy the rest of the week. :)
Thanks for the prayers!
Lots of Love
Crystal
It turns out he won't be starting Chemotherapy tomorrow. I guess the doctor had to send the biopsy to University of Michigan for another opinion. They can't start the treatments until they know exactly what it is and they have not heard back yet. After they find out what it is they need to get authorization from our insurance company. Its going to be a few days for them to get all that done. So they pushed back tomorrows appointment to Tuesday morning. Its alright though we're going to try and be patient and enjoy the rest of the week. :)
Thanks for the prayers!
Lots of Love
Crystal
Tuesday, February 23, 2010
Just Another Day...
Today was great. We both went to work. Robert's lung test was quick and painless. He is feeling good, a little anxious for Thursday but I'm sure that's pretty standard. Not much else happened, it felt like any other day. I never realized how nice it was to have a "normal" day. We definitely used to take them for granted! Now everyday seems like a blessing. He actually seems happy that he gets to go to work...I never thought that would happen! :) Anyway, we send our love!
Love
Crystal
Love
Crystal
Monday, February 22, 2010
Results
We went in today for all the test results. Some good news, the doctor says that the cancer only stage III. We were all so relieved that it was not stage IV. The bone marrow biopsy came back negative. We were able to see the PET scan. The scan showed a really large black mass along mediastinum (middle of chest) , some masses in the right supraclavicular portion of his neck (where he found the lump), and a spot in his spleen. They doctor thinks this has probably been developing for about 9 months to a year. They are still waiting on the pathology results for the lymph node biopsy. They first thought it was Hodgkin's but it is not staining like Hodgkin's normally would, so they think that it may be Non-Hodgkins T cell rich B cell lymphoma. If they can't definitively tell us what it is by tomorrow they may have to send it out for further observation.
Tomorrow Robert has an appointment to check the strength of his lungs. This will help them make sure they are not being damaged because of treatment.He also has an appointment Thursday to start Chemotherapy. But they wont know which concoction of medicine to give him until they know for sure what type of lymphoma it is. For either types they usually do 6-8 cycles of Chemo. If it is Hodgkin's he will be given treatment once every two weeks . They do it intravenously and it will last a few hours. If it is Non Hodgkin's, T cell rich B cell lymphoma he would be given treatment once every 3 weeks and it would last about 6 hours. With this type they may also do radiation if they feel it will help. If it is Hodgkin's they gave him a 77% chance of this going into remission for at least 5 years. After that if it is still gone the chances are good that it wont come back. If it is the other (T cell..) the doctor will have to re evaluate that number. The good thing is that for either types the odds are still greater than 50%
Hopefully they will know what it is by Thursday so that we can get him started on Chemotherapy right away. Fortunately because of new technology and the drugs they have available he may only have a few days of down time every time he goes in for a treatment. Which means he wont have to be a hermit and stop living his life. He will get to go to work when he is feeling up to it and do the things he likes to do.
It has been a LONG week! After last Monday it literally felt like the world was going to stop spinning, everything was in pieces, I felt so broken. It has been hard, but we are learning to cope. We are feeling really good about things. We can't change what has already been done. We just have to keep going, put one foot in front of the other and move forward... When we find out more I will let you all know!
Love
Crystal
Tomorrow Robert has an appointment to check the strength of his lungs. This will help them make sure they are not being damaged because of treatment.He also has an appointment Thursday to start Chemotherapy. But they wont know which concoction of medicine to give him until they know for sure what type of lymphoma it is. For either types they usually do 6-8 cycles of Chemo. If it is Hodgkin's he will be given treatment once every two weeks . They do it intravenously and it will last a few hours. If it is Non Hodgkin's, T cell rich B cell lymphoma he would be given treatment once every 3 weeks and it would last about 6 hours. With this type they may also do radiation if they feel it will help. If it is Hodgkin's they gave him a 77% chance of this going into remission for at least 5 years. After that if it is still gone the chances are good that it wont come back. If it is the other (T cell..) the doctor will have to re evaluate that number. The good thing is that for either types the odds are still greater than 50%
Hopefully they will know what it is by Thursday so that we can get him started on Chemotherapy right away. Fortunately because of new technology and the drugs they have available he may only have a few days of down time every time he goes in for a treatment. Which means he wont have to be a hermit and stop living his life. He will get to go to work when he is feeling up to it and do the things he likes to do.
It has been a LONG week! After last Monday it literally felt like the world was going to stop spinning, everything was in pieces, I felt so broken. It has been hard, but we are learning to cope. We are feeling really good about things. We can't change what has already been done. We just have to keep going, put one foot in front of the other and move forward... When we find out more I will let you all know!
Love
Crystal
Sunday, February 21, 2010
Sunday
We had a nice time at church today. We have been the nursery leaders in our ward for the past 7 months or so and we have really enjoyed it. Unfortunately because Robert will be undergoing Chemotherapy we wont be able to continue teaching in the nursery. Robert's immune system is already weak due to the lymphoma and while undergoing the Chemotherapy he is supposed to be staying away from obviously sick people. As most know with lots of little children it can be conduit for germs. When the doctor found out we were in the nursery he told us to get out of there right away... Anyway we were not sure if we would be released this week or not but today was probably our last week. We have grown to love each of those little guys so much and we will miss spending time with them every week. But like the bishop said they will be there when he gets better.
Sacrament meeting was uplifting, we had a member of the stake presidency speak today and it seemed as if he was speaking directly to us. The spirit was strong and it felt really good. I know this trial is a test just like so many others that are placed in our lives each day. It has been difficult placing our fate in the lords hands and saying we will do the best we can but we leave the rest up to you. After finding out about all this at the beginning of the week our bishop and Robert's elders quorum president stopped by our house to give him a blessing. The bishop gave us some council that we should remember the atonement. This seemed a little odd, you would not expect that you should be thinking of the atonement. But I think for the first time it really sank in that when Christ suffered in Gethsemane he felt all that we would feel in this life. It was comforting to know that although at times you feel alone and that no one could understand, he knows exactly how you feel and knows exactly what you need. I am so happy that we have the gospel in our lives. I can't imagine going through life without knowing that there is an eternal plan for each of us.
We have Robert's appointment tomorrow to find out all the test results from last week. I will let you all know what we find out.
Thank you to everyone who fasted today on Robert's behalf. We love you all!
Love
Crystal
Sacrament meeting was uplifting, we had a member of the stake presidency speak today and it seemed as if he was speaking directly to us. The spirit was strong and it felt really good. I know this trial is a test just like so many others that are placed in our lives each day. It has been difficult placing our fate in the lords hands and saying we will do the best we can but we leave the rest up to you. After finding out about all this at the beginning of the week our bishop and Robert's elders quorum president stopped by our house to give him a blessing. The bishop gave us some council that we should remember the atonement. This seemed a little odd, you would not expect that you should be thinking of the atonement. But I think for the first time it really sank in that when Christ suffered in Gethsemane he felt all that we would feel in this life. It was comforting to know that although at times you feel alone and that no one could understand, he knows exactly how you feel and knows exactly what you need. I am so happy that we have the gospel in our lives. I can't imagine going through life without knowing that there is an eternal plan for each of us.
We have Robert's appointment tomorrow to find out all the test results from last week. I will let you all know what we find out.
Thank you to everyone who fasted today on Robert's behalf. We love you all!
Love
Crystal
Saturday, February 20, 2010
Fast
Robert is doing really well today! His spirits seem to be up. He got a lot of rest yesterday and says he is feeling good!
I wanted to let everyone know that a bunch of us are fasting tomorrow in case anyone would like to join us. I am so amazed at the blessings that are being poured out to us each day! Thank you to everyone who has helped us! Your generosity and kindness is very appreciated! You are all so amazing!
Love
Crystal
I wanted to let everyone know that a bunch of us are fasting tomorrow in case anyone would like to join us. I am so amazed at the blessings that are being poured out to us each day! Thank you to everyone who has helped us! Your generosity and kindness is very appreciated! You are all so amazing!
Love
Crystal
Friday, February 19, 2010
Lazy Day
We were hoping to have more information today from the Doctors but unfortunately there is no news. I called earlier today they said they did not have the results ready yet. After our appointment Monday we should have much more to tell.
Robert is doing good today. He has been recovering from the long day yesterday. Luckily he has not been in much pain. He only had to take one or two pain meds yesterday and today he said that he didn't need any at all. We have been home all day watching the Olympics and just taking it easy. He says that it feels weird being so lazy. I like it myself... but I guess I'm just naturally lazy :) Anyway I am going to try and post a little something everyday or every other day to for those of you who are interested in his progress. Thanks again for all the prayers!
Love
Crystal
Robert is doing good today. He has been recovering from the long day yesterday. Luckily he has not been in much pain. He only had to take one or two pain meds yesterday and today he said that he didn't need any at all. We have been home all day watching the Olympics and just taking it easy. He says that it feels weird being so lazy. I like it myself... but I guess I'm just naturally lazy :) Anyway I am going to try and post a little something everyday or every other day to for those of you who are interested in his progress. Thanks again for all the prayers!
Love
Crystal
Thursday, February 18, 2010
Only The Beginning...
We wanted to start a blog so that we could keep family and friends updated of Robert's progress.
For those of you who are not aware yet, Robert was diagnosed with lymphoma just 4 days ago.. this is how it all started...
Last Thursday(02/11/10) seemed to be just like any other day. Robert and I got up and went about our lives. That night as we were getting ready for bed Robert asked me to feel his neck, so I did. I felt a lump right above his clavicle at bottom of his neck. He said that he had noticed it a few days earlier and just didn't want to say anything. I was immediately worried and decided to look online to see what it might be. I ran across some information about lymphoma. I read about how some symptoms may be due to lymphoma (night sweats, fatigue,lumps on the neck) Robert had all of these and I soon realized that this could be serious. We went into the Dr. the next day and they did blood work and an ultrasound. They could not tell us exactly what it was on the ultrasound but they knew there were two masses in his neck. They decided to order an MRI for the following Monday(02/15/10).
We waited all weekend and tried to stay positive, but after the MRI on Monday we were informed that this was indeed lymphoma. Our next step was to find out how far it had spread in his body. The Dr. sent us back to get a CT scan. They found that it had spread throughout the neck, chest and abdomen and thought there might be a spot in his spleen. We were referred to a Oncologist (Dr. Shull) and were able to see him the next day (Tuesday).
After a consult with Dr. Shull he informed us of what was to come. We were to get a PET Scan, Bone marrow biopsy,Echo cardiogram, and consult with and ear,nose and throat Dr. so that they could get a biopsy of the lymph nodes that were in his neck. These tests would be used to find out exactly what type of lymphoma as well as allow them to stage how far the cancer had spread. With this information they could determine the best course of treatment. Dr. Shull said that he was pretty sure that Robert has had this for several months and that he believes that the cancer is at least at a stage III. From the way it is presenting itself it may be Hodgkins lymphoma. He said that there is no way to be sure though until he had these tests completed.
Wednesday morning we went to see Dr. Baker (ear,nose,throat Dr.) he informed us that Robert would need surgery for his lymph node biopsy, and that we were to get it done on Thursday. After Dr. Baker's we had an appointment for an Echo Cardiogram to test Roberts heart to make sure it is in good shape to undergo chemotherapy.
On Thursday morning (today) Robert had a fun filled day ahead of him. He was to have his bone marrow biopsy (from his hip) at 8am, at 9:30 he had his PET scan, and right after that at 11:30am we needed to be at Mt. View hospital for his lymph node surgery. He sure was a trooper though! I am so proud of him! He had a positive attitude and got through everything just fine! We are home now and he is resting. It has been a long week and we are looking forward to a few days of rest.
We may have more information tomorrow (Friday 02/19/10) after some of the test results come back. We are not sure yet if those will be available but if not tomorrow we have an appointment on Monday afternoon (02/22/10) with Dr. Shull to give us the results. He should have a game plan ready for us. Robert could start treatment as early as the next day... So that is good news.
This has definitely come as a shock to everyone. Robert is young and otherwise healthy, we had no idea that he was sick. It has been a very emotional week. We have been told that lymphoma has one of the highest success rates for going into remission and not coming back . The odds are in his favor even at a stage IV. So we are obviously happy about that and confident that Robert will get through this!
We cannot express how grateful we are for everyone who has been there to support us in this very hard time. We have had so many prayers said in our behalf and we need them to keep coming! We all need to stay positive and have faith, after all this is a test right? We can and will get through this! In just this short week I cannot begin to explain the many blessings that we have received. I know that even with all the bad news Heavenly Father is looking out for us. We are so lucky to have so many amazing people in our lives.
Thank You all for everything! We love you and will keep you posted!
Love
Robert & Crystal
For those of you who are not aware yet, Robert was diagnosed with lymphoma just 4 days ago.. this is how it all started...
Last Thursday(02/11/10) seemed to be just like any other day. Robert and I got up and went about our lives. That night as we were getting ready for bed Robert asked me to feel his neck, so I did. I felt a lump right above his clavicle at bottom of his neck. He said that he had noticed it a few days earlier and just didn't want to say anything. I was immediately worried and decided to look online to see what it might be. I ran across some information about lymphoma. I read about how some symptoms may be due to lymphoma (night sweats, fatigue,lumps on the neck) Robert had all of these and I soon realized that this could be serious. We went into the Dr. the next day and they did blood work and an ultrasound. They could not tell us exactly what it was on the ultrasound but they knew there were two masses in his neck. They decided to order an MRI for the following Monday(02/15/10).
We waited all weekend and tried to stay positive, but after the MRI on Monday we were informed that this was indeed lymphoma. Our next step was to find out how far it had spread in his body. The Dr. sent us back to get a CT scan. They found that it had spread throughout the neck, chest and abdomen and thought there might be a spot in his spleen. We were referred to a Oncologist (Dr. Shull) and were able to see him the next day (Tuesday).
After a consult with Dr. Shull he informed us of what was to come. We were to get a PET Scan, Bone marrow biopsy,Echo cardiogram, and consult with and ear,nose and throat Dr. so that they could get a biopsy of the lymph nodes that were in his neck. These tests would be used to find out exactly what type of lymphoma as well as allow them to stage how far the cancer had spread. With this information they could determine the best course of treatment. Dr. Shull said that he was pretty sure that Robert has had this for several months and that he believes that the cancer is at least at a stage III. From the way it is presenting itself it may be Hodgkins lymphoma. He said that there is no way to be sure though until he had these tests completed.
Wednesday morning we went to see Dr. Baker (ear,nose,throat Dr.) he informed us that Robert would need surgery for his lymph node biopsy, and that we were to get it done on Thursday. After Dr. Baker's we had an appointment for an Echo Cardiogram to test Roberts heart to make sure it is in good shape to undergo chemotherapy.
On Thursday morning (today) Robert had a fun filled day ahead of him. He was to have his bone marrow biopsy (from his hip) at 8am, at 9:30 he had his PET scan, and right after that at 11:30am we needed to be at Mt. View hospital for his lymph node surgery. He sure was a trooper though! I am so proud of him! He had a positive attitude and got through everything just fine! We are home now and he is resting. It has been a long week and we are looking forward to a few days of rest.
We may have more information tomorrow (Friday 02/19/10) after some of the test results come back. We are not sure yet if those will be available but if not tomorrow we have an appointment on Monday afternoon (02/22/10) with Dr. Shull to give us the results. He should have a game plan ready for us. Robert could start treatment as early as the next day... So that is good news.
This has definitely come as a shock to everyone. Robert is young and otherwise healthy, we had no idea that he was sick. It has been a very emotional week. We have been told that lymphoma has one of the highest success rates for going into remission and not coming back . The odds are in his favor even at a stage IV. So we are obviously happy about that and confident that Robert will get through this!
We cannot express how grateful we are for everyone who has been there to support us in this very hard time. We have had so many prayers said in our behalf and we need them to keep coming! We all need to stay positive and have faith, after all this is a test right? We can and will get through this! In just this short week I cannot begin to explain the many blessings that we have received. I know that even with all the bad news Heavenly Father is looking out for us. We are so lucky to have so many amazing people in our lives.
Thank You all for everything! We love you and will keep you posted!
Love
Robert & Crystal
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