Unfortunately we didn't get any news today about going to NIH in Maryland. The lady who is our contact out there was out of the office today. Can you believe that? It wasn't even a holiday and she had to take a day off.. Who does this?? So we will get the final answer on Monday.
Many of the people who pray for us like to be very specific with their prayers, so I got to thinking that I would let everyone know what Jon and I are praying for and what we want to happen, so if you wanted then you could be praying for the same thing. We are praying for a clear test result from the brain MRI. We don't want cancer here people. For obvious reasons. :> and also we are praying that the National Institute of Health will give the okay for Jon to start the TIL harvesting out there and one of their clinical trials for the B raff mutation. THis is our hope and prayers. We think this is the place we need to be right now and that this will give us a future.
Good news and Bad news are always suppose to go together, right? Well we have received our bad news, and now it is time for the good news. Thats not too much to ask and I think that our Heavenly Father will try and give that much to us "> Everyone take care and don't forget the fast on Sunday.
Thursday, December 31, 2009
Wednesday, December 30, 2009
Test results and Our new plan
I have so many things to say in this post that I hardly know where to begin. First I will start with how our little patient Jon is doing and then the test results and then what the new plan is.
Jon is still having a lot of fatigue. A shower in the morning wears him out and after he has to take a little rest. He has experienced a lot of nausea, vomiting and upset stomach, which makes it very hard to keep down food and calories. He is trying a lot harder however to make himself eat because of the significant weight lose he has experienced (28 lbs. total). The good news though is that he is in pretty good spirits and seems to want to do a little more now, like getting out of the house for the movies, little shopping trips or just playing legos with Max. Some days are worse and harder then others, so we just live one day at a time and usually nothing is planned in advance anymore. Which I like the planning, so its been another adjustment for me.
We got the results from Jon's CT scan this afternoon and they were not very encouraging. The cancer in Jon's pelvic bone and liver have both nearly doubled in size from the last scan that was done 7 weeks ago. Also, there is 5-6 new spots of cancer in his lungs which is really crappy news for us. That said this means that Interleukin II did nothing to even stop the cancer from spreading at all and so we will not be doing it again up at the Huntsman Center. Also, because Melanoma cancer has a tendency to go for soft tissues, we worry again about his brain, so we will be doing another MRI of his brain on Saturday.
We have mentioned before the Tumor Infiltrating Lymphocytes (TIL cells) on an early post as a possible treatment option for Jon and now that is one of the major things our Doctor is looking into. Its a treatment that is not yet FDA approved and so they call it a clinical trial, but has shown very good results. What they do is harvest the TIL cells from your cancer in your body and then grow it in a lab for 7 weeks and then they put them back into your body while you are in the hospital for three weeks at time and they infiltrate the cancerous tumors and kill them. We were trying to get into MD Anderson in Houston, TX. to start this treatment, but they are so over booked that the first available opening is a month from now, which we don't have that much time to let the cancer grow, so our Doctor thinks that the National Institute of Health in Maryland is a better option for us at this point. Also, MD Anderson has a co-pay to start treatment down there of $40,000 and Maryland is almost entirely covered by the clinical trial part, except for the traveling and hotel costs.(so we have heard) Obviously, Maryland although further away is a better fit for us. We should know if the TIL cell harvesting is a possibly by tomorrow.
Some of you might now ask what do we do while the TIL cells are growing out for those 7 weeks? We don't have time to waste on this cancer, so in the meantime while these TIL cells grow, we have a few different options to consider. Our doctor gave us three choices.
1. We can start on a chemotherapy called CVD Interferon. This is three chemo-therapies in one, so everything is three times as bad. Its given up at Huntsman in their lab 5 days a week for 21 days, then one week off and then start again. Its very toxic to the body and sometimes hard to recover from. It would make Jon loss his hair, all energy levels and also make all his labs very low. The Doctor said it also might make the labs drop so low that the TIL cells wouldn't be an option right away. On the upside it has a response rate of around 60% which is very high. This response however can be short lived.
2. Another chemotherapy called Carbo/Taxol. This is two chemo-therapies in one, and so not so bad as option one, but still kind of miserable. Its only given one day a week. All of the same side effects that you would expect with chemo. Its response rate is only around 30%, but it might just buy us enough time to get the TIL cells harvested and ready to go.
3. At the beginning of Jon's treatments some cancerous lymphatic tissues were extracted from Jon's shoulder and sent to the lab. We have just received word that after examining those cells is was discovered that Jon has a B raff (+) mutation in his melanoma. This is good because 60% of melanoma patients have this mutation and so its more common and there is more clinical trials out there for it. Our doctor has the hope that maybe we can get into one of the clinical trials that are strictly for the B raff patients. They are being offered in many locations including Colorado, Texas and California. This would be kind of a dream come true if we could get into one of these trials, but the waiting list is extremely long. Some places have 12 spots and like 30 patients wanting to get in. It is a benefit for us that Jon is young and in good health other then this stupid cancer, but still it might be too hard to get in.
If we get the go for Maryland for the TIL cell harvesting we will be on a fight next week. Jon would then have to heal up for two weeks from the surgery, but then we have to get started on some type of treatment ASAP. Our doctor has said that Melanoma cancer is a very hard one to fight because once you have it, it takes off like a rocket and can spread so quickly, which we have already learned.
This is our wish list and hopefully everything will just fall into place. I think I prepared myself better for these test results because although I didn't like them, I actually felt okay with them and feel like everything is going to be okay. One of these treatments has to work right?? That is what I keep telling myself and praying for. I have a really good feeling about the TIL cell treatment and know it would be a good thing and maybe where we are suppose to be right now, so that means we better be able to go. I feel very scared with the unknown and don't like not knowing what's going to happen, but I keep praying and asking for these things to work and hopefully all of our friends and family are too on our behalf. (I know many are praying for us and we appreciate it so much. It has touched us so deeply and it is wonderful to have the spirit comforting us all the time)
I would like to do another family and friend fast for Jon on Sunday and hope everyone will join in for our family. We need the blessings so deeply right now to help us stay strong and get through these hard times ahead. I will post again tomorrow as soon as I know if we can go to Maryland or not. We will have the results of the brain MRI on Monday. I hope this wasn't way to much to read and overwhelming :> Everyone have a good New Years and stay safe. I hope 2010 brings us all great blessing and a little fun.
Jon is still having a lot of fatigue. A shower in the morning wears him out and after he has to take a little rest. He has experienced a lot of nausea, vomiting and upset stomach, which makes it very hard to keep down food and calories. He is trying a lot harder however to make himself eat because of the significant weight lose he has experienced (28 lbs. total). The good news though is that he is in pretty good spirits and seems to want to do a little more now, like getting out of the house for the movies, little shopping trips or just playing legos with Max. Some days are worse and harder then others, so we just live one day at a time and usually nothing is planned in advance anymore. Which I like the planning, so its been another adjustment for me.
We got the results from Jon's CT scan this afternoon and they were not very encouraging. The cancer in Jon's pelvic bone and liver have both nearly doubled in size from the last scan that was done 7 weeks ago. Also, there is 5-6 new spots of cancer in his lungs which is really crappy news for us. That said this means that Interleukin II did nothing to even stop the cancer from spreading at all and so we will not be doing it again up at the Huntsman Center. Also, because Melanoma cancer has a tendency to go for soft tissues, we worry again about his brain, so we will be doing another MRI of his brain on Saturday.
We have mentioned before the Tumor Infiltrating Lymphocytes (TIL cells) on an early post as a possible treatment option for Jon and now that is one of the major things our Doctor is looking into. Its a treatment that is not yet FDA approved and so they call it a clinical trial, but has shown very good results. What they do is harvest the TIL cells from your cancer in your body and then grow it in a lab for 7 weeks and then they put them back into your body while you are in the hospital for three weeks at time and they infiltrate the cancerous tumors and kill them. We were trying to get into MD Anderson in Houston, TX. to start this treatment, but they are so over booked that the first available opening is a month from now, which we don't have that much time to let the cancer grow, so our Doctor thinks that the National Institute of Health in Maryland is a better option for us at this point. Also, MD Anderson has a co-pay to start treatment down there of $40,000 and Maryland is almost entirely covered by the clinical trial part, except for the traveling and hotel costs.(so we have heard) Obviously, Maryland although further away is a better fit for us. We should know if the TIL cell harvesting is a possibly by tomorrow.
Some of you might now ask what do we do while the TIL cells are growing out for those 7 weeks? We don't have time to waste on this cancer, so in the meantime while these TIL cells grow, we have a few different options to consider. Our doctor gave us three choices.
1. We can start on a chemotherapy called CVD Interferon. This is three chemo-therapies in one, so everything is three times as bad. Its given up at Huntsman in their lab 5 days a week for 21 days, then one week off and then start again. Its very toxic to the body and sometimes hard to recover from. It would make Jon loss his hair, all energy levels and also make all his labs very low. The Doctor said it also might make the labs drop so low that the TIL cells wouldn't be an option right away. On the upside it has a response rate of around 60% which is very high. This response however can be short lived.
2. Another chemotherapy called Carbo/Taxol. This is two chemo-therapies in one, and so not so bad as option one, but still kind of miserable. Its only given one day a week. All of the same side effects that you would expect with chemo. Its response rate is only around 30%, but it might just buy us enough time to get the TIL cells harvested and ready to go.
3. At the beginning of Jon's treatments some cancerous lymphatic tissues were extracted from Jon's shoulder and sent to the lab. We have just received word that after examining those cells is was discovered that Jon has a B raff (+) mutation in his melanoma. This is good because 60% of melanoma patients have this mutation and so its more common and there is more clinical trials out there for it. Our doctor has the hope that maybe we can get into one of the clinical trials that are strictly for the B raff patients. They are being offered in many locations including Colorado, Texas and California. This would be kind of a dream come true if we could get into one of these trials, but the waiting list is extremely long. Some places have 12 spots and like 30 patients wanting to get in. It is a benefit for us that Jon is young and in good health other then this stupid cancer, but still it might be too hard to get in.
If we get the go for Maryland for the TIL cell harvesting we will be on a fight next week. Jon would then have to heal up for two weeks from the surgery, but then we have to get started on some type of treatment ASAP. Our doctor has said that Melanoma cancer is a very hard one to fight because once you have it, it takes off like a rocket and can spread so quickly, which we have already learned.
This is our wish list and hopefully everything will just fall into place. I think I prepared myself better for these test results because although I didn't like them, I actually felt okay with them and feel like everything is going to be okay. One of these treatments has to work right?? That is what I keep telling myself and praying for. I have a really good feeling about the TIL cell treatment and know it would be a good thing and maybe where we are suppose to be right now, so that means we better be able to go. I feel very scared with the unknown and don't like not knowing what's going to happen, but I keep praying and asking for these things to work and hopefully all of our friends and family are too on our behalf. (I know many are praying for us and we appreciate it so much. It has touched us so deeply and it is wonderful to have the spirit comforting us all the time)
I would like to do another family and friend fast for Jon on Sunday and hope everyone will join in for our family. We need the blessings so deeply right now to help us stay strong and get through these hard times ahead. I will post again tomorrow as soon as I know if we can go to Maryland or not. We will have the results of the brain MRI on Monday. I hope this wasn't way to much to read and overwhelming :> Everyone have a good New Years and stay safe. I hope 2010 brings us all great blessing and a little fun.
Saturday, December 19, 2009
Hi everyone.
We have been out of the hospital for a week now and so happy to be home. Jon started Radiation to his pelvic bone this week to help with the pain he has experienced. They have scheduled him to have 10 treatments, which is one a day for 10 days in a row. It seems after his second treatment that he has already experienced some pain relief in that area, which has been great. But, it has taken all of his little energy that he had completely out of him. Its like he can't get enough good sleep even though he is sleeping all the time.
Monday he will start the new chemotherapy drug we mentioned in an earlier post called Zometa. He will be getting this drug every 6 weeks to help with the bone destruction that has occurred because of the cancer.
I have mentioned before that Jon's gallbladder has been acting up some during treatments and that has continued to bother him. He always has a sick stomach and lots of nausea and vomiting. Even though he is eating now he just lost another 3 pounds. We are going to get this problem hopefully checked out on Monday also along with his chemo and radiation treatments that are scheduled. I am not sure yet what will exactly come of it.
Jon has his next pet scan and CT scan scheduled for December 28th. It has already been 6 weeks.. Time is just flying by for us. We will not get the results until December 30th but we will be sure and post something soon after. I can honestly say that I am so scared to even see results at all and keep hoping that it won't be bad news like the last one.
Thank you everyone for your support you have given us. We didn't know we were so loved by so many. We have been able to meet so many good people that it has been just amazing for us. Thank you for everyone who has donated to us also. I wish I could send everyone a personalized thank you note to say how really blessed and thankful we are, but hopefully everyone can understand that I just don't have the time, but I do care and thank Heavenly Father every night for such wonderful people in our lives. All of you have helped us so very much. You give us strength to keep going everyday instead of just laying in bed and crying.
Well, that is about everything for now. I will keep everyone up to date about this next week. Take care and have a Happy Holiday season with your family.
We have been out of the hospital for a week now and so happy to be home. Jon started Radiation to his pelvic bone this week to help with the pain he has experienced. They have scheduled him to have 10 treatments, which is one a day for 10 days in a row. It seems after his second treatment that he has already experienced some pain relief in that area, which has been great. But, it has taken all of his little energy that he had completely out of him. Its like he can't get enough good sleep even though he is sleeping all the time.
Monday he will start the new chemotherapy drug we mentioned in an earlier post called Zometa. He will be getting this drug every 6 weeks to help with the bone destruction that has occurred because of the cancer.
I have mentioned before that Jon's gallbladder has been acting up some during treatments and that has continued to bother him. He always has a sick stomach and lots of nausea and vomiting. Even though he is eating now he just lost another 3 pounds. We are going to get this problem hopefully checked out on Monday also along with his chemo and radiation treatments that are scheduled. I am not sure yet what will exactly come of it.
Jon has his next pet scan and CT scan scheduled for December 28th. It has already been 6 weeks.. Time is just flying by for us. We will not get the results until December 30th but we will be sure and post something soon after. I can honestly say that I am so scared to even see results at all and keep hoping that it won't be bad news like the last one.
Thank you everyone for your support you have given us. We didn't know we were so loved by so many. We have been able to meet so many good people that it has been just amazing for us. Thank you for everyone who has donated to us also. I wish I could send everyone a personalized thank you note to say how really blessed and thankful we are, but hopefully everyone can understand that I just don't have the time, but I do care and thank Heavenly Father every night for such wonderful people in our lives. All of you have helped us so very much. You give us strength to keep going everyday instead of just laying in bed and crying.
Well, that is about everything for now. I will keep everyone up to date about this next week. Take care and have a Happy Holiday season with your family.
Tuesday, December 8, 2009
Another treatment session at Huntsman Cancer Institute
"So far so good.. Jon received his 5th doses of IL-2 around 5 pm. tonight. He is doing extremely well and the doctors are very happy. He is scheduled for his 6th dose at 1 am, if everything stays the same.
All of his vital signs are good so far and he hasn't had to be put on any blood pressure medication. so far so good huh?? His gallbladder is starting to act up and his bilirubin level has risen a lot just since yesterday. Dr. Grossman says we can either put a drain in the gallbladder if it gets to bad or just push through it. He was very happy how Jon's gallbladder last time got better so quickly, so he thinks its worth it to just keep going with the treatment.
Jon is remaining pretty content and happy this inpatient treatment. He is just going to "push through it" he says. He is staying in good spirits and not getting to homesick. We talk to our kids everyday on the phone. :)
The new plan: After talking with our specialist Dr. Grossman today is that during Jon's home stay after this week, we will be going back up to Huntsman to do some outpatient Radiation treatments to his pelvic area to help with the pain that has been pretty much unbearable. (This is one of the reasons he cannot work because he cannot sit for long periods of time or even walk for that matter) The radiation will be everyday for like 5-6 days in a row. (counting the week of Christmas). During that radiation Jon will also be receiving some chemotherapy medication called Zometa. Zometa is primarily used in patients that have had breast cancer and have had their cancer spread to their bone, but Dr. Grossman has a good feeling that this Zometa will stop the cancer from progressing any further in Jon's bones. (Unfortunately, the IL-2 treatment has not had good results with treating cancer in the bone, so something else is needed to help with that cancer) We will start receiving this chemotherapy every 6 weeks along with the IL-2 and radiation.
Thank you for all of your thoughts and prayers. I would also like to add to all our friends and family that we really appreciate everyone that has been spreading the word about what we are going through because it has helped us make new friends and also with getting donations. We love everyone and thanks again for thinking about my family during this holiday season. Tiffany"
All of his vital signs are good so far and he hasn't had to be put on any blood pressure medication. so far so good huh?? His gallbladder is starting to act up and his bilirubin level has risen a lot just since yesterday. Dr. Grossman says we can either put a drain in the gallbladder if it gets to bad or just push through it. He was very happy how Jon's gallbladder last time got better so quickly, so he thinks its worth it to just keep going with the treatment.
Jon is remaining pretty content and happy this inpatient treatment. He is just going to "push through it" he says. He is staying in good spirits and not getting to homesick. We talk to our kids everyday on the phone. :)
The new plan: After talking with our specialist Dr. Grossman today is that during Jon's home stay after this week, we will be going back up to Huntsman to do some outpatient Radiation treatments to his pelvic area to help with the pain that has been pretty much unbearable. (This is one of the reasons he cannot work because he cannot sit for long periods of time or even walk for that matter) The radiation will be everyday for like 5-6 days in a row. (counting the week of Christmas). During that radiation Jon will also be receiving some chemotherapy medication called Zometa. Zometa is primarily used in patients that have had breast cancer and have had their cancer spread to their bone, but Dr. Grossman has a good feeling that this Zometa will stop the cancer from progressing any further in Jon's bones. (Unfortunately, the IL-2 treatment has not had good results with treating cancer in the bone, so something else is needed to help with that cancer) We will start receiving this chemotherapy every 6 weeks along with the IL-2 and radiation.
Thank you for all of your thoughts and prayers. I would also like to add to all our friends and family that we really appreciate everyone that has been spreading the word about what we are going through because it has helped us make new friends and also with getting donations. We love everyone and thanks again for thinking about my family during this holiday season. Tiffany"
Friday, December 4, 2009
Updates of the past week and a half
I have some updates to post and I know it's been a while since the last post so bear with me! I received lots of updates from Tiff in an email so all of the following news is what she sent to me.
"Review of the Interleukin II therapy - Jon was scheduled to have 14 doses of IL-2 while at the hospital and the doctors and nurses, usually say "the more the better" when it comes to how many doses, but your body is what tells them the "stopping point" (since it is different for everyone) and when it is too dangerous to continue. Jon's body gave out after the 7th dose. He had a major gallbladder attack so they were not able to complete anymore doses. Luckily they did not have to remove his gallbladder, they just gave us a very expensive antibiotic (5 pills at $32 a pill after insurance). Also Jon's bilirubin level was at a 7 when normally in your body its like a 0.1, so he was very jaundiced and that was another indicator of his body's stop point.
Dr. Grossman, our specialist and oncologist, said that during our second IL-2 (which is this Sunday Dec. 6th) if anything like his gallbladder attack happens again this time around that maybe removal of his gallbladder or putting some type of shunt into the gallbladder to drain off the toxins might be our option so we can continue with the treatment as much as possible.
Overview of this past week and a half at home -
Jon has been very tired still and is sleeping about 18-20 hours per day. He lost all of the excesses fluid all over his body every quickly (within 4 days) after discharge, but had a hard time losing the extra fluid in his lungs and had to go on another antibiotic to help aid his body in recovery and prevent Pneumonia. (Oh great, more money in antibiotics! Luckily the good old insurance covered a bit more.) He has not had an appetite at all and has a hard time eating (lots of nausea and vomiting). When we first went to Huntsman on Nov. 1st Jon weighted 164 lb. and now he is down to 141 lb. He really can not afford to lose anymore, and that is what the Doctors say also, not just his wife! If you know Jon at all, you will know that he is very stubborn and this has been a very hard thing to get him to eat. If it doesn't sound wonderful then he won't eat. If anyone knows of suggestions of high calorie, high fat foods I would love to receive them!
This past Monday and Tuesday have been a little bit better and he has a little more energy to play with the kids, go out a little, etc. He was able to do some Christmas shopping for the kids and kind of just have fun.
I don't want to get anyone's hopes up or anything but I just have to share this news because it has really given me hope for this treatment of IL-2. I don't want to jinx myself and think this is something great and then get bad news at the Pet scan at the end of December.....but while Jon was receiving treatment and the first 5 days out of the hospital, he had no pain in his pelvic bone and didn't have to take any pain meds which was a big thing for me because lately he has had to have pain meds non-stop to cope with the pain. So then not having to have any of them for a little while really gave me hope. Also, on Jon's left side of his back you can feel the cancerous lymph node and I swear it got a little smaller. I am really not sure if any of this is an indicator of the treatment working, but really I didn't think I would see any changes and seeing these small things has really made me have hope. :> I just hope there are no more disappointment at the Pet scans.
We are scheduled to go in this Sunday to stay at Huntsman to start the last part of the first scheduled IL-2 treatment. We will be up there for the whole week and they will try to do as many doses that his body will take.
On a side note: I talked to Jon's boss at work and we discussed a leave bank for Jon that all State employees can donate their sick leave time to. Jon will completely run out of all his annual and sick leave right before Christmas and he has to at least have 5 hours per week in order to keep his insurance. Which of course is vital to us right now! (The first 5 days at Huntsman for treatment cost $67,000 we just the bill that was sent to our insurance!) Also, Jon will be going on short term disability in January which is only 60% of his income, so if state employees will donate time to him then he can have more paid leave and more treatment, so will please everyone donate time if they have it."
That was the end of the email. Thanks to everyone who has been so helpful and caring to Jon and Tiffany and their family. And please know that your prayers, donations and anything else you can or have sent their way are very much appreciated! I am so glad that so many people are stepping up to help them, and I am so glad that they get to see how much they are loved! We love you Jon and Tiffany (and Max and Kena too of course :D )!
"Review of the Interleukin II therapy - Jon was scheduled to have 14 doses of IL-2 while at the hospital and the doctors and nurses, usually say "the more the better" when it comes to how many doses, but your body is what tells them the "stopping point" (since it is different for everyone) and when it is too dangerous to continue. Jon's body gave out after the 7th dose. He had a major gallbladder attack so they were not able to complete anymore doses. Luckily they did not have to remove his gallbladder, they just gave us a very expensive antibiotic (5 pills at $32 a pill after insurance). Also Jon's bilirubin level was at a 7 when normally in your body its like a 0.1, so he was very jaundiced and that was another indicator of his body's stop point.
Dr. Grossman, our specialist and oncologist, said that during our second IL-2 (which is this Sunday Dec. 6th) if anything like his gallbladder attack happens again this time around that maybe removal of his gallbladder or putting some type of shunt into the gallbladder to drain off the toxins might be our option so we can continue with the treatment as much as possible.
Overview of this past week and a half at home -
Jon has been very tired still and is sleeping about 18-20 hours per day. He lost all of the excesses fluid all over his body every quickly (within 4 days) after discharge, but had a hard time losing the extra fluid in his lungs and had to go on another antibiotic to help aid his body in recovery and prevent Pneumonia. (Oh great, more money in antibiotics! Luckily the good old insurance covered a bit more.) He has not had an appetite at all and has a hard time eating (lots of nausea and vomiting). When we first went to Huntsman on Nov. 1st Jon weighted 164 lb. and now he is down to 141 lb. He really can not afford to lose anymore, and that is what the Doctors say also, not just his wife! If you know Jon at all, you will know that he is very stubborn and this has been a very hard thing to get him to eat. If it doesn't sound wonderful then he won't eat. If anyone knows of suggestions of high calorie, high fat foods I would love to receive them!
This past Monday and Tuesday have been a little bit better and he has a little more energy to play with the kids, go out a little, etc. He was able to do some Christmas shopping for the kids and kind of just have fun.
I don't want to get anyone's hopes up or anything but I just have to share this news because it has really given me hope for this treatment of IL-2. I don't want to jinx myself and think this is something great and then get bad news at the Pet scan at the end of December.....but while Jon was receiving treatment and the first 5 days out of the hospital, he had no pain in his pelvic bone and didn't have to take any pain meds which was a big thing for me because lately he has had to have pain meds non-stop to cope with the pain. So then not having to have any of them for a little while really gave me hope. Also, on Jon's left side of his back you can feel the cancerous lymph node and I swear it got a little smaller. I am really not sure if any of this is an indicator of the treatment working, but really I didn't think I would see any changes and seeing these small things has really made me have hope. :> I just hope there are no more disappointment at the Pet scans.
We are scheduled to go in this Sunday to stay at Huntsman to start the last part of the first scheduled IL-2 treatment. We will be up there for the whole week and they will try to do as many doses that his body will take.
On a side note: I talked to Jon's boss at work and we discussed a leave bank for Jon that all State employees can donate their sick leave time to. Jon will completely run out of all his annual and sick leave right before Christmas and he has to at least have 5 hours per week in order to keep his insurance. Which of course is vital to us right now! (The first 5 days at Huntsman for treatment cost $67,000 we just the bill that was sent to our insurance!) Also, Jon will be going on short term disability in January which is only 60% of his income, so if state employees will donate time to him then he can have more paid leave and more treatment, so will please everyone donate time if they have it."
That was the end of the email. Thanks to everyone who has been so helpful and caring to Jon and Tiffany and their family. And please know that your prayers, donations and anything else you can or have sent their way are very much appreciated! I am so glad that so many people are stepping up to help them, and I am so glad that they get to see how much they are loved! We love you Jon and Tiffany (and Max and Kena too of course :D )!
Tuesday, November 17, 2009
Day 2 of the IL-2 treatment and some more pictures
Tiffany just emailed me this update: "Jon is just about to receive 5th dose and his body is tolerating the IL-2 great. The Dr. is very happy with all the results so far. He has been able to maintain normal B/P and heart rate. Getting a little puffy in the eyes and tummy :> which is completely normal and expected to gain a lot more. He seems pretty happy and alert right now, but doesn't have an appetite at all."
So, so far so good! Keep those prayers coming everyone!
Tiffany and Jon had some AMAZING family photos taken by the fabulous Clara Jerome . And they would like us to send a great big THANK YOU to her! Take a look at these. Have you ever seen a more beautiful family?
So, so far so good! Keep those prayers coming everyone!
Tiffany and Jon had some AMAZING family photos taken by the fabulous Clara Jerome . And they would like us to send a great big THANK YOU to her! Take a look at these. Have you ever seen a more beautiful family?
Monday, November 16, 2009
Everybody please join us in prayer...and an update from Tiffany
This is an email I received from Jon's aunt Barb. I think this is a wonderful idea and am going to be emailing this to all of my family and friends and hope that you will do the same.
"Hello Family and Friends,
As many of you know, my nephew Jon Unander has been admitted to the Huntsman Cancer center today to begin his first week of treatment for his melanoma. We have fasted and offered our prayers in his behalf and for his wife and children. His name is in the temple.
Wednesday is his 31st birthday. We want to do something more for him. So we are asking that everyone and anyone who knows and loves him, or knows someone who does, will stop whatever they are doing at 7:30 p.m. (Mountain time) (That would be 6:30 pacific time and 9:30 eastern etc.)and kneel in prayer to ask that the Lord will give him strength, comfort his family and especially that the treatment will have the intended effect. Please forward this email to any of your family and friends that all can participate if they would like to. Jon’s family will greatly appreciate our efforts in asking for these blessings for Jon and Tiffany, Maxwell and Kenadee. Let’s exercise our faith together as family and friends! Thank You, Barb"
I hope everyone joins us in this! Set an alarm on your cell phone, alarm clock, watch (or ANYTHING) to remind you to pray at 7:30 MST.
Next, I have a letter from Tiffany that she sent to everyone on the Facebook page today. I thought I'd paste it here for everyone to see and read also.
"Thanks for all of those sweet messages that everyone put on the facebook page for us and thanks even more for the thoughts and prayers. We are really feeling the prayers today because we have strength and are holding tight.
Jon started the IL-2 at 9:30 am this morning and will get a strong dose every 8 hrs. until his body can no longer take it and it bottoms out. (meaning no more urine output and heart rate goes over 200 and blood pressure is lower into the 80's/40's.) So far though his heart rate has doubled and is in the 120's with blood pressure staying within normal limits and only sometimes going low. He is having hot and cold flashes and has a lot of tremors here and there. Also, the doctors said he will get sort of a sun burn look which is already forming.
Please keep us in your prayers and thanks for all the support, Its great to know we have such a great support network to lean on during this hard time. Tiffany"
Here are some picture updates from Tiff:
"Hello Family and Friends,
As many of you know, my nephew Jon Unander has been admitted to the Huntsman Cancer center today to begin his first week of treatment for his melanoma. We have fasted and offered our prayers in his behalf and for his wife and children. His name is in the temple.
Wednesday is his 31st birthday. We want to do something more for him. So we are asking that everyone and anyone who knows and loves him, or knows someone who does, will stop whatever they are doing at 7:30 p.m. (Mountain time) (That would be 6:30 pacific time and 9:30 eastern etc.)and kneel in prayer to ask that the Lord will give him strength, comfort his family and especially that the treatment will have the intended effect. Please forward this email to any of your family and friends that all can participate if they would like to. Jon’s family will greatly appreciate our efforts in asking for these blessings for Jon and Tiffany, Maxwell and Kenadee. Let’s exercise our faith together as family and friends! Thank You, Barb"
I hope everyone joins us in this! Set an alarm on your cell phone, alarm clock, watch (or ANYTHING) to remind you to pray at 7:30 MST.
Next, I have a letter from Tiffany that she sent to everyone on the Facebook page today. I thought I'd paste it here for everyone to see and read also.
"Thanks for all of those sweet messages that everyone put on the facebook page for us and thanks even more for the thoughts and prayers. We are really feeling the prayers today because we have strength and are holding tight.
Jon started the IL-2 at 9:30 am this morning and will get a strong dose every 8 hrs. until his body can no longer take it and it bottoms out. (meaning no more urine output and heart rate goes over 200 and blood pressure is lower into the 80's/40's.) So far though his heart rate has doubled and is in the 120's with blood pressure staying within normal limits and only sometimes going low. He is having hot and cold flashes and has a lot of tremors here and there. Also, the doctors said he will get sort of a sun burn look which is already forming.
Please keep us in your prayers and thanks for all the support, Its great to know we have such a great support network to lean on during this hard time. Tiffany"
Here are some picture updates from Tiff:
Friday, November 13, 2009
Bad News: November 13th Update
This update was just sent to me by Cheryl one of Tiffany's sisters:
"I just talked to Tiffany and have some BAD news to relate... Jon just had several more tests done at Huntsman including a PET scan which showed that the cancer has spread to his liver, pelvic bone, hip, and femur. They are, of course, devastated by this news.
The plan is to admit Jon to Huntsman this Sunday night to start treatment with an immunotherapy drug called Interleukin-2 (IL-2). This is a substance that is normally produced by the body during an immune response. It works with the body's immune system to stop or slow the growth of cancer cells. The prognosis with this treatment is 10%. During administration he has to stay in the hospital as the drug is very toxic. It can cause flu-like symptoms that are quite severe. It is known to be much worse than chemotherapy in its side effects, but at this point it is the last resort.
He will stay for one week in the hospital while getting this drug and then will be home for 2 weeks, then will go back in for 2 weeks of treatment then home for one week, then back in for another week. At that time he will be reevaluated and have more testing done to see if the drug is working as intended. If not, another round will begin. During the first week he is home he will be going to Huntsman for daily radiation of his hip and pelvic bone to help decrease the pain. Right now he is in so much pain he has to use a cane to walk and cannot sit for very long.
The doctors are also in the process of finding out if he is a candidate for another investigational and rare therapy that is only done in Maryland and Texas. It is TIL cell(tumor infiltrating lymphocyte) harvesting and replacement. With this procedure Jon's lymphocytes would be harvested (removed) and then cultured for 7 weeks in the presence of Interleukin-2. After that time period the "activated" lymphocytes would be transfused back into his body. The goal with this treatment is that his body would then be able to fight off the cancer. He would have to go to Texas to have this done in between sessions of Interleukin therapy at Huntsman. The prognosis with this type of treatment is 25%."
I also cannot stress enough how much they need help in the way of monetary donations. He cannot work anymore and the bills are really going to start piling up. So of course they have that stress on top of everything else. Please spread the word about this need and also donate as much as you can. Thank you.
"I just talked to Tiffany and have some BAD news to relate... Jon just had several more tests done at Huntsman including a PET scan which showed that the cancer has spread to his liver, pelvic bone, hip, and femur. They are, of course, devastated by this news.
The plan is to admit Jon to Huntsman this Sunday night to start treatment with an immunotherapy drug called Interleukin-2 (IL-2). This is a substance that is normally produced by the body during an immune response. It works with the body's immune system to stop or slow the growth of cancer cells. The prognosis with this treatment is 10%. During administration he has to stay in the hospital as the drug is very toxic. It can cause flu-like symptoms that are quite severe. It is known to be much worse than chemotherapy in its side effects, but at this point it is the last resort.
He will stay for one week in the hospital while getting this drug and then will be home for 2 weeks, then will go back in for 2 weeks of treatment then home for one week, then back in for another week. At that time he will be reevaluated and have more testing done to see if the drug is working as intended. If not, another round will begin. During the first week he is home he will be going to Huntsman for daily radiation of his hip and pelvic bone to help decrease the pain. Right now he is in so much pain he has to use a cane to walk and cannot sit for very long.
The doctors are also in the process of finding out if he is a candidate for another investigational and rare therapy that is only done in Maryland and Texas. It is TIL cell(tumor infiltrating lymphocyte) harvesting and replacement. With this procedure Jon's lymphocytes would be harvested (removed) and then cultured for 7 weeks in the presence of Interleukin-2. After that time period the "activated" lymphocytes would be transfused back into his body. The goal with this treatment is that his body would then be able to fight off the cancer. He would have to go to Texas to have this done in between sessions of Interleukin therapy at Huntsman. The prognosis with this type of treatment is 25%."
I also cannot stress enough how much they need help in the way of monetary donations. He cannot work anymore and the bills are really going to start piling up. So of course they have that stress on top of everything else. Please spread the word about this need and also donate as much as you can. Thank you.
Tuesday, November 3, 2009
Update on brain MRI and the next step in care/November 3rd 2009
The MRI done on Saturday shows NO brain involvement. This is great news! The pelvic MRI showed a quarter size spot of cancer with a larger surrounding area with potential "early" cancer cells. This may change the surgical treatment as more bone may need to be removed. The next step is to do a biopsy on the affected pelvic bone to find out what type of cancer it is. This will be done next Wednesday, Nov. 11 and the results will be given to Jon and Tiffany on Monday, Nov. 16. At that point the plan is to have the oncology team at Huntsman get together and have a discussion regarding the plan of care.
Also a 6 week follow up PET scan will be done on November 13 to make sure the cancer hasn't spread and that everything still looks the same as it did 6 weeks ago.
This next part applies to any local family and friends that would like to help out: Right now Jon continues to work and go to school despite being in pain and feeling very tired. The bulk of the family responsibilities is falling to Tiffany so anything we can do to lighten her load will be very helpful. A few of Tiffany's sisters have been going by (and plan to continue to do so) weekly and helping with cleaning, organizing and any other household chores. Anyone that would like to come by also is welcome to! The more the merrier. Some people have brought in meals and the plan is to set up a schedule for this so that they are getting help with meals on a regular basis. If you would like to bring by a meal please contact Tiffany by phone, or email us at the blog and we will let you know how to contact her.
Also a 6 week follow up PET scan will be done on November 13 to make sure the cancer hasn't spread and that everything still looks the same as it did 6 weeks ago.
This next part applies to any local family and friends that would like to help out: Right now Jon continues to work and go to school despite being in pain and feeling very tired. The bulk of the family responsibilities is falling to Tiffany so anything we can do to lighten her load will be very helpful. A few of Tiffany's sisters have been going by (and plan to continue to do so) weekly and helping with cleaning, organizing and any other household chores. Anyone that would like to come by also is welcome to! The more the merrier. Some people have brought in meals and the plan is to set up a schedule for this so that they are getting help with meals on a regular basis. If you would like to bring by a meal please contact Tiffany by phone, or email us at the blog and we will let you know how to contact her.
Wednesday, October 28, 2009
Newest info as of Oct 28, 2009
The plan is to do a brain MRI on Saturday to see if the cancer has spread there. Then they will do another pelvic bone biopsy to make sure the cancer there is from the melanoma and not another cancer altogether (like a sarcoma). The doctor is 95% sure it is metastatic melanoma in his pelvic bone, but they want to make sure as it would change treatment. Once all of the testing is done they want to take out the affected pelvic bone and all of the lymph nodes on his left side. After the surgery the plan is to give him an immunotherapy drug called Interferon. It is a one year treatment every few weeks. It's intended to act with his body's immune system to fight the cancer. The prognosis with all of these plans is 25% which is the best possible at this point.
Tiffany and Jon both seem to be in good spirits and have positive attitudes about the plan.
Tiffany and Jon both seem to be in good spirits and have positive attitudes about the plan.
About Jon and Tiffany
Jon (30) and Tiffany (26) have been happily married for 7 years. They have two adorable children, Maxwell (age 4) and Kenadee (age 1). Jon was recently diagnosed with stage 4 metastatic melanoma. (Find more information about this cancer here.)
About 7.5 years ago Jon had a suspicious looking mole removed from his back. It turned out to be melanoma, a very dangerous and potentially deadly form of skin cancer. At the time they attempted to remove the cancer from the area by removing some nearby lymph-nodes and the mole. They thought they got it all and for the last 7 years his blood work has looked "normal".
5 months ago Jon noticed a small, tender lump under his arm. He waited for it to heal and get better (hoping for the best) but the lump only continued to grow. A biopsy was done and they found out that the lump was actually melanoma; apparently there were some cancerous cells left from the original site and it has now spread (metastasized).
Soon after this was discovered, Jon experienced some tenderness in his leg/groin area and then cancer was discovered in his pelvic bone also. This is believed to be melanoma as well, but a bone sample needs to be taken before that can be verified. The type of cancer that is in his bone will determine how the doctors will treat the cancer.
The outlook isn't great. Even with all of the best treatments (and "best case scenarios") Jon has about a 25% chance of a cure. Jon is a strong person and he is not going to give up! He is an amazing daddy and a great husband and isn't about to leave his beautiful family without a fight. And the doctors have told him that he definitely is in for the fight of his life.
Jon has already had many medical procedures done, with many MANY more to come. They do have insurance but the deductibles and their out of pocket costs are starting to (and will continue to) pile up. We can help this amazing young family by donating money, spreading the word and offering our prayers and support.
Please help however you can!
About 7.5 years ago Jon had a suspicious looking mole removed from his back. It turned out to be melanoma, a very dangerous and potentially deadly form of skin cancer. At the time they attempted to remove the cancer from the area by removing some nearby lymph-nodes and the mole. They thought they got it all and for the last 7 years his blood work has looked "normal".
5 months ago Jon noticed a small, tender lump under his arm. He waited for it to heal and get better (hoping for the best) but the lump only continued to grow. A biopsy was done and they found out that the lump was actually melanoma; apparently there were some cancerous cells left from the original site and it has now spread (metastasized).
Soon after this was discovered, Jon experienced some tenderness in his leg/groin area and then cancer was discovered in his pelvic bone also. This is believed to be melanoma as well, but a bone sample needs to be taken before that can be verified. The type of cancer that is in his bone will determine how the doctors will treat the cancer.
The outlook isn't great. Even with all of the best treatments (and "best case scenarios") Jon has about a 25% chance of a cure. Jon is a strong person and he is not going to give up! He is an amazing daddy and a great husband and isn't about to leave his beautiful family without a fight. And the doctors have told him that he definitely is in for the fight of his life.
Jon has already had many medical procedures done, with many MANY more to come. They do have insurance but the deductibles and their out of pocket costs are starting to (and will continue to) pile up. We can help this amazing young family by donating money, spreading the word and offering our prayers and support.
Please help however you can!
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