Good morning to my dear family and friends,
It's hard to believe that the last time I was blogging was Thanksgiving. You can tell I'm great at the computer thing and it wears me out some keeping up with it. I want to do it because I know your prayers and love comfort and help me everyday. I really do appreciate you sincerely and know I wouldn't be doing as well as I am right now without them. Know that even though you may not hear from me as often as you should, I am still thinking of you and greatful you are beside me.
Calvin keeps his e-mails sending out information which helps me alot. Of course he doesn't have everyone's e-mail that I would include so I will do my best with a short version of the last 2 months.
My doctors in the states wanted to have me sign up to a clinical study they are trying to get cleared with FDA in the country. It has terrible side affects.....you are sick!! More than I am now. I asked what the benefits would be and they told me that 25% of the people that agree to go on the "ipi" increase their life by 4 months. WHAT? That is not worth it or good enough for me. I told tham that I wanted to pray about it. I asked what my other options were and they said back to chemo and radiation. Well, I don't want to ever go back to that, I say, but I guess I should never say never. My heart was so heavy for 4 days. I talked to my mom , certainly Calvin, a few close friends....kept prayering and reading my scriptures. I woke up on the 5th day and had an impression to call Leona who is my natural path who got me started when I was first diagnosed. She told me about a clinic/hospital in Tiquana that started in Greece and she knew of people who had gone over and are still having infusions once a year. She gave me the website. The more she told me the better I felt. The gut-ache left me and I realized it was an answer to my prayers....something natural, an option that had no side effects. That night Calvin and I went over all the information, called the IBC clinic the next morning and made reservations to go to Mexico. My doctor here in Wenatchee wasn't excited about my decision. I had to get my medical records from him. He said he had heard of people going over there and not having any success. He had told me 3 weeks earlier that I was running out of luck. So I thought, "Why not try something else." My heart felt about it so I decided it didn't mather to me what they felt. Dr. Garrison has been great to me and I just get my mind to jump another 6 months of chemo and be so ill.
We left Wenatchee about 4 days later, right after Thanksgiving and arrived in Mexico late that night. I started the infusions the next morning. They put them in your arm like an I.V. and they last about 4 hours. We met some wonderful, fun people there who we still stay in contact with. They helped the time to pass. The clinic has a dining room, very small that you eat your meals in and make your meals according to the type of cancer you have and the program you are on. It isn't just a clinic for cancer even though the most the patients do have some form of cancer. We were there 21 days. While you are there , my first day, they draw 13 fiels of blood and for the next 3 weeks while you are undergoing your infusions they spin it and treat it in a lab, adding an antibody to it. It's complicated for me to explain but it's called the "Dendretic Cell." The day before you leave they show you how to have your spouse, friend or whoever, yourself if need be...to inject this back into your body. It's your own immune system made stronger. They don not claim to cure you or heal you but to strengthen your immune system so it can kill the cancer. Very interesting. That's why there are no side effects. It's your own self being put back into your own self but treated, stronger and different. Calvin does my injections every Friday morning before he goes to work, once a week for the 13 weeks.
The first time you go is called the "crisis phase." The doctor you get assigned to you there determines how often you will come back. I go back every 4 months this first year and we will see how my blood and the cancer has responded thus far. When I arrived there my first day my immune system was a 4.9 count. Not so great. 6 is about the lowest. My second week there it had gone up to 4.0. My third week there it had gone up to 3.2. They drew my blood the day I left and Dr. Romero sent Calvin an email and told it was it perfect. It was 2.5. The best. This tells us that the infusions, the food and treats that I had received had worked well so far. This is exciting for me. Tiquana is not the place I want to hang out but it is for a while. calvin thought we would run on the beach and have some what of a vacation...sorry honey! It was freezing cold while we were there. I go back March 28th I believe. We haven't determined exactly what day but it is already time to go in for "Booster." It's only for 12 days now instead of 21. That was a long time to be gone.
We got home from Mexico 4 days belfore Christmas. Raced around to get myself ready, left for Blise to see Jason, Bergen and their swet triplets. We stayed through the New Year and drove home. I got the head crude with throat, ear, sinus...everything but the fever. I have been on the recovery mode since.
I knew this would not be short. Maybe that is why I have put it off but I did want to share it with you. I have felt very good the last 3 weeks and feel like the treatments are kicking in now. It's takes about 6-7 weeks they said. So... we continue to have faith and appreciate your prayers and love that you, our dear loved ones send our way.
"Remeber Me"
Remember me whenever you see a sunrise
Remember me whenever you see a star
Remember me whenever you see a rainbow
Or woods in autumn colors from afar.
Remember me whenever you see the roses
Or eagles sailing high in a sky of blue
Remember me whenever you see waves shining in the sun
And remember I'll be remembering you.
Remember me whenever you see a teardrop
Or meadows still wet with the morning dew
Remember me whenever you feel love growing in your heart
And remember I'll be remembering you!
(A song about our Heavenly Father)
Love Janae
Monday, February 14, 2011
Friday, November 26, 2010
Dendritic Cell (DC)
Happy Thanksgiving to all of you! Every day needs to be a thanks giving day. We all know that. I want to keep you posted on my procedures that I have decided on. Calvin and I are leaving for Seattle early Sunday morning to go to Tiquina, Mexico for a treatment that I feel better about.
The procedure involves drawing blood from me. RNA-loaded Dendritic cell vaccines start with precursors which, when matured for the vaccine, are currently considered the most effective antigen-presenting cells within the immune system. They are then able to amplify tumor RNA from me, whether from the primary tumor site, distant metastatic sites, (my brain) or from tumor cells present in the circulation and transfect my DC's with my tumor RNA. This process offers the ability for most cancer types at any stage of disease to be target opportunities for this cancer vaccine. At this point they have created a weapon which, when injected into me as an infusion, will act as a cellular "smart-bomb_ in modern defense parlances.
Yes, it does sound complicated. I have been on the phone with the hospital in Mexico through this week, Calvin also. The doctors here are telling me of course they are not be takers of this...no surprise. They don't have an other options for me except more chemo and the "ipi". Neither of them are good for me so..... my prayers and heart are directing me this way. The Biocure hospital does not promise a cure but more of a healing process than than what I have left.
Once again I ask for your prayers. I know I have your love and concern. It means so much. Calvin will have his computer and we can email. I have to be down there for 3 weeks for these infusions which gets me home Dec. 18th. HO,HO,HO HAPPY HOLIDAYS!
Count Your Blessings and be grateful!
cgwhite@televar.com
Janae
The procedure involves drawing blood from me. RNA-loaded Dendritic cell vaccines start with precursors which, when matured for the vaccine, are currently considered the most effective antigen-presenting cells within the immune system. They are then able to amplify tumor RNA from me, whether from the primary tumor site, distant metastatic sites, (my brain) or from tumor cells present in the circulation and transfect my DC's with my tumor RNA. This process offers the ability for most cancer types at any stage of disease to be target opportunities for this cancer vaccine. At this point they have created a weapon which, when injected into me as an infusion, will act as a cellular "smart-bomb_ in modern defense parlances.
Yes, it does sound complicated. I have been on the phone with the hospital in Mexico through this week, Calvin also. The doctors here are telling me of course they are not be takers of this...no surprise. They don't have an other options for me except more chemo and the "ipi". Neither of them are good for me so..... my prayers and heart are directing me this way. The Biocure hospital does not promise a cure but more of a healing process than than what I have left.
Once again I ask for your prayers. I know I have your love and concern. It means so much. Calvin will have his computer and we can email. I have to be down there for 3 weeks for these infusions which gets me home Dec. 18th. HO,HO,HO HAPPY HOLIDAYS!
Count Your Blessings and be grateful!
cgwhite@televar.com
Janae
Thursday, November 11, 2010
Seattle scan & "ipi"
Good morning to everyone:
Calvin and I had an adventure and long day yesterday but GREAT! We started at a new place for my MRI because they didn't have time for my appointment where I usually go at the University of Washington hospital.
Then we went over to U. of Wash. and waited 2 hours to see Dr. Rockhill. Sara, his assistent came in with a huge smile after we were in the room waiting over an hour and said "do you want the good news?" What a relief. She brought up all the tumors on the screen. She told me the one Rockhill did the gamma knife on last month was a bit smaller. Everything was stable which is good in their eyes. Of course I want some shrinkage!. "Patience my dear," my mom would be saying! Dr. Rockhill came in. Said it looked good and he thought the tumor seemed to be responding. We asked him some questions about the "ipi". He said he difinately thought it to be the next best step but this new Dr. Thompson that we were going to meet afterwards would be the pro to anser my questions.
We left his office at 3:00. Drove about 30 minutes to the Cancer Alliance Center. Waited there and got in to visit with him. He explained everything to us and answered our questions. I told him that I was worried about the side affects from the "ipi". It is a trial test that has been out for 8 years but not approved by the FDA. It's sppose to be out in March. On a scale of 0 - being great and 4 - being lousy in health, they only take the cancer melanoma patience that are in the 0 & 1 range which would make me a candidate. He says they have dropped the infusion dose from 10, 3, or 1. You usually don't get side affects until after the 3rd infusion. Or sometimes they don't come until later but do not last a life time. He told us that it is certain more promising then goin back through another round of Chemo. The cancer will keep coming back. The "ipi" is much more promising. He said "Janae the chemo makes you sick also." True. He gave us a 3 ring binder FULL of stuff to go over. I asked him if I was his wife what would he do. He said he understood the tough decision but he would have her do it because it can improve the risk of cancer throughout the organs and not just the brain. It last 4 months and you go over there for the infusion every 3 weeks.
I know you have other people to pray for but please keep me in your prayers. We are thinking we may go ahead and do it. We signed the consent form yesterday because Dr. Thompson also has to sign it in your presents. We can always back out but decided to save us another trip we would do it while we were there. He checked me over and said I was great but he needed a HIV blood test and some other scary ones ran. We went down to the lab and of course, if you don't know my history, I don't like giving my blood away. They got there best man there. I have learned to give a warning before they just call me back. He poked me 5 times and kept telling me how sorry he was. By now it was 6:15 and the lights were flickering off. He got 1 tube and said they would see if it was enough.
Got home after Calvin took me to a nice dinner and ctrawed in bed about 11:00...a long day for me and I didn't even drive!
We love you all so much and appriecate your thoughts and interest this fight for life!
Janae
Hymn
"Sweet hour of pray, sweet hour of prayer!
That calls me from a world of care,
And bids me at my Father's throne
Make all my wants and wishes known.
In seasons of distress and grief
My sould as often found relief
And oft escaped the tempter's snare
By thy return,
Sweet hour of prayer!
Sweet hour of prayer, sweet hour of prayer!
Thy wings shall my petition bear
To him whose truth and faithfulness
Engage the waiting soul to bless.
And since he bids me seek his face,
Believe his word and trust his grace,
I'll cast on him my every care
And wait for thee, sweet hour of prayer!
Calvin and I had an adventure and long day yesterday but GREAT! We started at a new place for my MRI because they didn't have time for my appointment where I usually go at the University of Washington hospital.
Then we went over to U. of Wash. and waited 2 hours to see Dr. Rockhill. Sara, his assistent came in with a huge smile after we were in the room waiting over an hour and said "do you want the good news?" What a relief. She brought up all the tumors on the screen. She told me the one Rockhill did the gamma knife on last month was a bit smaller. Everything was stable which is good in their eyes. Of course I want some shrinkage!. "Patience my dear," my mom would be saying! Dr. Rockhill came in. Said it looked good and he thought the tumor seemed to be responding. We asked him some questions about the "ipi". He said he difinately thought it to be the next best step but this new Dr. Thompson that we were going to meet afterwards would be the pro to anser my questions.
We left his office at 3:00. Drove about 30 minutes to the Cancer Alliance Center. Waited there and got in to visit with him. He explained everything to us and answered our questions. I told him that I was worried about the side affects from the "ipi". It is a trial test that has been out for 8 years but not approved by the FDA. It's sppose to be out in March. On a scale of 0 - being great and 4 - being lousy in health, they only take the cancer melanoma patience that are in the 0 & 1 range which would make me a candidate. He says they have dropped the infusion dose from 10, 3, or 1. You usually don't get side affects until after the 3rd infusion. Or sometimes they don't come until later but do not last a life time. He told us that it is certain more promising then goin back through another round of Chemo. The cancer will keep coming back. The "ipi" is much more promising. He said "Janae the chemo makes you sick also." True. He gave us a 3 ring binder FULL of stuff to go over. I asked him if I was his wife what would he do. He said he understood the tough decision but he would have her do it because it can improve the risk of cancer throughout the organs and not just the brain. It last 4 months and you go over there for the infusion every 3 weeks.
I know you have other people to pray for but please keep me in your prayers. We are thinking we may go ahead and do it. We signed the consent form yesterday because Dr. Thompson also has to sign it in your presents. We can always back out but decided to save us another trip we would do it while we were there. He checked me over and said I was great but he needed a HIV blood test and some other scary ones ran. We went down to the lab and of course, if you don't know my history, I don't like giving my blood away. They got there best man there. I have learned to give a warning before they just call me back. He poked me 5 times and kept telling me how sorry he was. By now it was 6:15 and the lights were flickering off. He got 1 tube and said they would see if it was enough.
Got home after Calvin took me to a nice dinner and ctrawed in bed about 11:00...a long day for me and I didn't even drive!
We love you all so much and appriecate your thoughts and interest this fight for life!
Janae
Hymn
"Sweet hour of pray, sweet hour of prayer!
That calls me from a world of care,
And bids me at my Father's throne
Make all my wants and wishes known.
In seasons of distress and grief
My sould as often found relief
And oft escaped the tempter's snare
By thy return,
Sweet hour of prayer!
Sweet hour of prayer, sweet hour of prayer!
Thy wings shall my petition bear
To him whose truth and faithfulness
Engage the waiting soul to bless.
And since he bids me seek his face,
Believe his word and trust his grace,
I'll cast on him my every care
And wait for thee, sweet hour of prayer!
Tuesday, November 9, 2010
Good afternoon to some of my favorite people....family and friends. It's hard to believe Fall is here almost Winter and another 4 weeks has gone by. Bergen just had her triplets and Jud took me to boise for a two day "rock and hold" trip. They are well and Bergen went home lastnight. The babies will be there until around Thanksgiving. Even though means many times to the hospital which is 20 minutes away, it will give her some rest time. We left Judson there to help with Jada. She is 18 months. The house will be busy but so happy and blessed they feel for answered prayer.
I am on my way tomorrow early to have lab work done, another MRI on my brain and meet with a new doctor, Dr. Thompson. They are proposing a clinical study for me. I haven't made up my mind yet because I need more information from Dr. Thompson who I will meet tomorrow. The percentages of a cure or a better life do not impress me. The side effects are severe as they say. Diaherra, arthritis, which I already have, pitary gland problems, skin rashes, swellin in the eyeballs. Not a great quality for life. I am doing better then most that go on this.
It's called "Ipilimumah" Ipi for short. There is quite a bit of information on line about it. They will go over my results from my last gamma knife that I had Oct. 7 and then we will see what needs to happen. I guess it's good to always have something to pray about and draws us closer to our Heavenly Father.
Think of me tomorrow and remember in your prayers. They mean so much to our family.
MATTHEW 5:13-16
"Ye are the salt of the earth but if the salt have lost it's savor, wherewith shall it be salted?
it is thenceforth good for nothing, but to be cast out, and to be trodden under foot of man.
Ye are the light of the world. A city set on a hill cannot be hid. Neither do men light a candle and put in under a bushel, but on a candlestick; and it giveth light unto all that are in the house.
Let your light so shine before men, that they may see your good works and glorify your Father which is in heaven."
I'll write Friday morning. We usually get home to late. It's a long day!
love to you all
Janae
I am on my way tomorrow early to have lab work done, another MRI on my brain and meet with a new doctor, Dr. Thompson. They are proposing a clinical study for me. I haven't made up my mind yet because I need more information from Dr. Thompson who I will meet tomorrow. The percentages of a cure or a better life do not impress me. The side effects are severe as they say. Diaherra, arthritis, which I already have, pitary gland problems, skin rashes, swellin in the eyeballs. Not a great quality for life. I am doing better then most that go on this.
It's called "Ipilimumah" Ipi for short. There is quite a bit of information on line about it. They will go over my results from my last gamma knife that I had Oct. 7 and then we will see what needs to happen. I guess it's good to always have something to pray about and draws us closer to our Heavenly Father.
Think of me tomorrow and remember in your prayers. They mean so much to our family.
MATTHEW 5:13-16
"Ye are the salt of the earth but if the salt have lost it's savor, wherewith shall it be salted?
it is thenceforth good for nothing, but to be cast out, and to be trodden under foot of man.
Ye are the light of the world. A city set on a hill cannot be hid. Neither do men light a candle and put in under a bushel, but on a candlestick; and it giveth light unto all that are in the house.
Let your light so shine before men, that they may see your good works and glorify your Father which is in heaven."
I'll write Friday morning. We usually get home to late. It's a long day!
love to you all
Janae
Tuesday, October 5, 2010
Wednesday - Harbor View Hospital
Good morning to all of you!
I continue to ask for your faith and prayers. We are going to Harbor View for an gamma knife. It will be Thursday morning early. I have to be there at 6:30 a.m. I will post a blog Friday or Saturday....I promise. I appreciate all the blessings I have been given this first year of this cancer diagnois. As hard has it is to always thin of myself and take of me, I have had a great year of blessings.
In the Doctrine & Covenants chapter 14, verse 7:
And if you keep my commandments and endure to the end you shall have eternal life, which gift is the greatest of all the gifts of God.
i love and appreciate you all. May you also be blessed and protect through your channagnes and trials. I know we all have them. I also pray for you.
Janae
I continue to ask for your faith and prayers. We are going to Harbor View for an gamma knife. It will be Thursday morning early. I have to be there at 6:30 a.m. I will post a blog Friday or Saturday....I promise. I appreciate all the blessings I have been given this first year of this cancer diagnois. As hard has it is to always thin of myself and take of me, I have had a great year of blessings.
In the Doctrine & Covenants chapter 14, verse 7:
And if you keep my commandments and endure to the end you shall have eternal life, which gift is the greatest of all the gifts of God.
i love and appreciate you all. May you also be blessed and protect through your channagnes and trials. I know we all have them. I also pray for you.
Janae
Friday, October 1, 2010
Dear family,
Janae has been doing well the past month or so and lately seems to be increasing her stamina day by day. Yesterday we went to the University of Washington for her latest MRI scan. We met with her oncologist, Dr. Rockhill.
He told us that yesterdays scan shows some items of concern. One of the tumors today was the size of your thumbnail. Previously it had not been detected or even tracked because it was so small that it was not a concern. Another one of the tumors that had been treated with the Gamma Knife radiation last October had additional swelling around it and it is too a concern. Dr. Rockhill said this is precisely why he recommends that we have an MRI performed every 3 months so that we can detect any new tumors or any tumors that are growing. The good news is that none of the other seven tumors which were previously treated with the Gamma Knife procedure (last October) have grown. In fact many of them have continued to shrink significantly since the last MRI scan in June.
We are discouraged that any of the tumors have grown at all, but believe it is due to Janae's having had such great results for this entire last 11 1/2 months since her last Gamma Knife procedure. Dr. Rockhill strongly suggests that Janae recieve the Gamma Knife radiation treatment again for the second time. We are in agreement and have made arrangements for this to happen next Thursday, October 9th.
We want you to know that we feel very blessed that her progress has been so significant. We continue to recieve so many kind encouragements and thank all of you for your thoughts and prayers. We know they make a huge difference in the outcome. We are very thankful for each day and for her continued progress in so many ways. We appreciate all of your expressions of love, thoughtfulness, and kindness and we go through these difficult times. Your prayers and friendship mean the world to us. We love you all,
Calvin and Janae
Janae has been doing well the past month or so and lately seems to be increasing her stamina day by day. Yesterday we went to the University of Washington for her latest MRI scan. We met with her oncologist, Dr. Rockhill.
He told us that yesterdays scan shows some items of concern. One of the tumors today was the size of your thumbnail. Previously it had not been detected or even tracked because it was so small that it was not a concern. Another one of the tumors that had been treated with the Gamma Knife radiation last October had additional swelling around it and it is too a concern. Dr. Rockhill said this is precisely why he recommends that we have an MRI performed every 3 months so that we can detect any new tumors or any tumors that are growing. The good news is that none of the other seven tumors which were previously treated with the Gamma Knife procedure (last October) have grown. In fact many of them have continued to shrink significantly since the last MRI scan in June.
We are discouraged that any of the tumors have grown at all, but believe it is due to Janae's having had such great results for this entire last 11 1/2 months since her last Gamma Knife procedure. Dr. Rockhill strongly suggests that Janae recieve the Gamma Knife radiation treatment again for the second time. We are in agreement and have made arrangements for this to happen next Thursday, October 9th.
We want you to know that we feel very blessed that her progress has been so significant. We continue to recieve so many kind encouragements and thank all of you for your thoughts and prayers. We know they make a huge difference in the outcome. We are very thankful for each day and for her continued progress in so many ways. We appreciate all of your expressions of love, thoughtfulness, and kindness and we go through these difficult times. Your prayers and friendship mean the world to us. We love you all,
Calvin and Janae
Tuesday, September 28, 2010
Good after noon to all my favorite people....
We have been out of town the last 12 days and it has made me realize how fast time goes. I have missed not keeping up with you. Many of you call me by phone and I guess no news is the best news. I appreciate your prayers and love. I know many think of me still and I feel your concern.
We are going over to Seattle for another MRI on my brain tomorrow. It always makes me a bit nervous to check in but something that certainly needs to be done to know how my progress is going. I have blood work at 10:00, my MRI scan at noon, and then I see my doctor at 2:00. Most of the time they are not running on time so we get out of the hospital around 5 or 6. By the time we get home, it's pretty late. I will let you know my results Thursday morning.
"Ring the bells that still can ring
Forget your perfect offereing
There is a crack in everything
That's how the light gets in."
Love Janae
P.S. Your prayers and fasting would be so great! Thanks again for all you do for our family and mean to us!
We have been out of town the last 12 days and it has made me realize how fast time goes. I have missed not keeping up with you. Many of you call me by phone and I guess no news is the best news. I appreciate your prayers and love. I know many think of me still and I feel your concern.
We are going over to Seattle for another MRI on my brain tomorrow. It always makes me a bit nervous to check in but something that certainly needs to be done to know how my progress is going. I have blood work at 10:00, my MRI scan at noon, and then I see my doctor at 2:00. Most of the time they are not running on time so we get out of the hospital around 5 or 6. By the time we get home, it's pretty late. I will let you know my results Thursday morning.
"Ring the bells that still can ring
Forget your perfect offereing
There is a crack in everything
That's how the light gets in."
Love Janae
P.S. Your prayers and fasting would be so great! Thanks again for all you do for our family and mean to us!
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