February 15, 2013

Dear Family and Friends,

Yesterday we traveled to Seattle so that Janae could receive an MRI scan.  Later we met with Dr. Rockhill to review the scan.  He told us that he felt both of the tumors that had been threatening Janae previously, and which he treated in October and November, appeared to be about the same size or maybe just a little bit smaller.  However, he told us that the scan showed where one other tumor, that had been present and that we had been watching, had tripled in size since our December scan.  Previously it was about the size of the top of your finger and now it is the size of a large grape.  This tumor is growing aggressively and is now the current threat to Janae.  The swelling continues to be a problem and was about the same as the December scan or a bit worse.  We shared with him that Janae has deteriorated over the past month or so in many areas, such as having her eyes closed much of the time, sleeping more, not as coherent, having hallucinations, etc.  He explained that all of these would be symptoms of this new tumor and the continued effect of swelling in the brain.  Dr Rockhill felt that with all that is going on that he did not feel comfortable treating her with any Gamma Knife radiation at this time.  He commended Janae for being so optimistic and for all that she has done to keep going for so much longer than he ever expected or thought possible.  He said that he knew we had an impressive support group, but that we may want to contact Hospice and have them help us care for Janae.  Together, we decided to increase her steroids for a short period and then have another scan in the next 6 weeks to see if anything more could be done for Janae, if that is what we wanted to do.

This was not good news.  Prior to having the scan we knew that something was not right with Janae and so we wanted to see what was going on according to the scan.  This, however, was not what we wanted to see.  We are downhearted that Janae has done so much and we felt that we had the threatening tumors in check at our last scan in December.  We had hoped that she could do better, but had observed that she was not doing better.  Apparently this new tumor, and other smaller tumors that are also present, could grow at any time and be very serious threats to her wellbeing. 

We will be determining with Janae how we should go forward and to what extent.  We are very grateful for all of our many blessings and for all of our wonderful family members and very supportive friends that have done so much to help and inspire both Janaeand I for the past 3 ½ years.  We feel that all of your prayers are being answered in our lives and thank you for them.  Thank you also for all of your acts of kindness.  This may be a good time for any of you who desire, to contact Janae, as we do not know what the future holds.  You can call her at home after noon at (509) 884-3307.  We love you all,

Calvin and Janae

Dec 22, 2012

Dear Family and Friends,

This last Tuesday we traveled to Seattle so that Janae could receive an MRI scan.  Later we met with Dr. Rockhill to review the scan.  He told us that he felt both of the tumors that have been threatening Janae may be just a little bit smaller.  He didn’t feel that the change was significant other than neither of the tumors seems to have grown any larger.  This continues to be good news considering how much the newest tumor had been growing from May thru August.   However, he showed us on the scan that the swelling in the brain has increased quite a bit, maybe almost doubling from her last scan a month ago.  We shared that Janae has had headaches almost continually for the past 2 months.  Dr Rockhill explained that this swelling and inflammation in the brain was due to using the Gamma Knife and is one of the side effects of using radiation.  Certainly the headaches are a result of all of the swelling going on in her brain.  He felt that I needed to increase her steroids once again to see if that could help reduce the swelling in the brain.  Unfortunately, this also has other consequences especially making it so that she retains lots of water and gets somewhat bloated.

He felt that Janae should receive another scan in a couple of months just to keep an eye on things.  He showed us that there is one other tumor a bit larger than we would like to see it, that doesn’t yet appear to be growing or causing any threat just yet.  Janae has been receiving physical therapy for the past few weeks and as typical of her, she is impressing the staff with her determination and desire to improve each week.  She is making small improvements in the use of her left hand and left foot and her strength continues to improve.

We find ourselves feeling very grateful for all of our many blessings and for all of our wonderful family members and great friends.  We feel positive that that we are seeing the effects of additional blessings being answered on both of our behalves.  We thank each of you for all of your prayers and acts of kindness that you provide.  This has been a long journey and we are very grateful for each of you and for the role you play in our lives.  We love you all,

Calvin and Janae

October 2012 update

Dear Family and Friends,

This last week we traveled to Seattle so that Janae could receive 4 Fractionalized Gamma Knife treatments, one on each day, Monday thru Thursday, and then returned home.  Dr. Rockhill treated the newest tumor on Monday and Wednesday and her larger tumor behind her left ear on Tuesday and Thursday.  We are very pleased that he has decided to treat both of the tumors that are causing any concern to her.  The newest tumor is the one that is making it so that she cannot walk.  During Janae’s last treatment on Thursday, Dr. Rockhill came in to the room where I was waiting to share with me that he felt that Janae was doing very well at receiving the treatments.  He went on to say that he has seen many responses after similar treatments to other patients where the tumors that are treated shrink up to 30% in just a week or so.  We are very hopeful that this can also be the case for Janae’s tumors.  We return next Friday, October 12^th, for an MRI.  Following the MRI we will meet with Dr. Rockhill to assess the results of the recent treatments.  He will then decide when she will need to return for additional Fractionalized Gamma Knife Treatments.  They could start as soon as the following Monday or the next Monday or the second Monday following our appointment.

We feel grateful for your thoughts and prayers and all of your support.  We recognize that all blessings great and small come from a loving Heavenly Father.  We love you all,

Calvin and Janae

June and July updates

July 26, 2012

DearFamily and Friends,
     Yesterday Janae and I traveled to the University of Washington in Seattle to meet with our several cancer doctors.  We met with her Neurologist, Radiology Oncologist, and Neurosurgeon.  They were all very concerned about the fast growth of a new tumor combined with the overall swelling throughout the brain attributed to a large tumor behind her left ear.  We didn’t have a good report.  It seems that many of the treatments that we previously felt were still options to utilize are no longer viable.  Her Neurologist felt the best treatment to undertake presently is to use Avastin a chemotherapy type drug.  However, use of this drug has significant chances of causing bleeding of the other tumors, which could cause severe and even life threatening responses. 

     Her Radiology Oncologist feels that dueto the global swelling and space taken up by the tumors themselves, that theuse of the Gamma Knife is very dangerous and may cause significant problems due to increased swelling which almost always follows treatment.  This swelling could cause a stroke, aneurism, or series of bleeding of the tumors.  He told us that he would be very reluctant to proceed with the Gamma Knife presently.  We had considered surgery prior to meeting with the Neurosurgeon.  He described the process necessary to remove the newer tumor, which basically would not be feasible until after removing the larger tumor surgically.  The removal of the larger tumor would most likely make it so that Janae could no longer speak.  This would be followed about a week later by the removal of the smaller (new) tumor would most likely make it so that she could no longer walk.  Obviously we are not at all interested in surgery with these types of outcomes.  He continued by stating that in his review of the recent MRI he could see that several of the other smaller tumors were starting to grow.  Any of these could shortly become just as much of a threat as the newer tumor which is currently causing Janae so many problems.  We met repeatedly with the doctors and at last came to the conclusion that we would use the Avastin to try to reduce the swelling. If this were successful, then the Radiology Oncologist would consider providing treatment of the newer tumor by use of the Gamma Knife.  We felt good with this solution, even in light of the risks associated with use of Avastin.
    
     These were very sobering discussions and the doctors repeatedly reminded us that none of these treatments would change her survival.  This was very hard to hear since we have had such great response to the many different protocols that we have utilized over the past 3years.  We have been very downhearted over receipt of this information. However, we continue to be upbeat about finding and using treatments that will still be beneficial for Janae.  Janae very much dislikes being unable to care for herself and dependent on others for all of her care.  We love Janae and also want to make sure that we do what is best for her. 
We thank all of you for all of your prayers and encouragement.  I know that we will most definitely need them now more than ever.  We love you all,
Calvin and Janae



June 28, 2012

Dear Family and friends,

I wanted to just let all of you know that Janae has been deteriorating for some time.  Lately her speech has gotten more labored and she just chooses not to talk very much because it is hard for her to think about the words to use.  Her balance has also gotten much worse and she fell in the bathroom a few days ago.  I believe all of her challengesare the result of the continuing large amount of inflammation in her brain. The doctors believe this could be the result of the after effects of the GammaKnife.  We feel it could also be from the body fighting the cancer and just as in a wound, the infection is a sign of the fight going on.  In any event the brain is not a good place to have the inflammation since it is difficult for the body to remove it from the brain.

From observing her, it seems that either the tumor, or the inflammation, or both have continued to grow.  Neither one of these is good.  Our doctors are also very concerned with the large amount of swelling that has been present in her brain now for many months.  I feel that we need to do something now to help her condition.  Since we have not found anything in the U.S. that seems to help reduce the inflammation, we have decided to go back to Tijuana, Mexico for some more of the treatments she received there.  They will not harm her in any way and can only help.  After the 2 trips we made for treatments last year, I recall that her inflammation seemedto be reduced.  We hope to have the same results this time.  We leave Sunday,July 1st and may be gone up to 30 days.  We pray that all will go well for you and your families.  Thank you for all you do for us and our family.  We love you all,

Calvin and Janae

Janae's Update 5/20/12

It is easier for me to share with you a recent email sent to our family members about my current condition.  I sure appreciate your letters and all of the things that you do, and keeping me in your thoughts and prayers.  Here is the contents of the email:

Dear Family,


Yesterday we traveled to Seattle so that Janae could have an MRI scan and to visit with her two doctors. Following the scan we met with both of her doctors together to discuss their assessment of her current scan. They felt that all of the 8 tumors were about the same size including the largest tumor. This was good news in that this largest tumor has appeared to stop growing. However, of greater concern is the continued large size of the inflammation and of its protrusion throughout her brain. Her symptoms seem to be about the same from the pressure the inflammation is creating on all of the brain, and specifically her speech and word retrieval sections of her brain. She has had continuing problems with her speech and word recollection. This pressure from the inflammation is still causing a shift of the midline of the brain of about .3 inches, pushing the midline of the brain and ventricules to the right side. The doctors both felt that this might be a good time to try Avastin, a drug which has been available for about 4 – 5 years. They feel that this may help significantly reduce the swelling (inflammation). Dr. Chamberlain has used this on about 15 patients over the past few years and said that about 75% of the time people have had good results, the other 25% of the time there really haven’t been any measurable results from the drug. However, like most drugs of this nature in up to 5% of the time there can be serious side effects such as stroke, heart attack or even death. We decided to continue as we are, since Janae is not currently threatened with the growth of the tumor or more increase of the inflammation, for the time being. We are going to consider the use of this drug to see if it might improve Janae’s quality of life and visit with the doctors in 3 more months when we return for another scan. It was good to visit with both doctors at the same time so that we could get a read on how they feel about her progress, situation, and their recommendations.

The doctors both believe the continuing large amount of inflammation is most likely evidence of continued treatment effects from the radiation involved in administering the Gamma Knife treatment. Janae and I believe it could be the result of the Gamma Knife treatment and also the effects of the alternative treatment that she has been pursuing since October last year. The doctors concur that it is most likely the result of the body fighting the cancer and the inflammation is the result of this continuing fight in her brain. The alternative treatment would be using this same process to kill the cancer cells and inflammation such as we are seeing is evidence that it is attempting to rid her brain of the cancer cells.

We felt good after meeting and reviewing the scans with Janae’s doctors. We feel they are very qualified and care about Janae and really want her to have the best care and the best quality of life. It is great to receive their support. They both felt she looked and acted remarkably well. Janae is doing quite well in spite of all that is going on in her brain. She continually amazes me as to her ability to continue with many things she wants to do in her life, when many with her condition would emotionally be checking out and just sitting around and wasting away. Even in light of not feeling well she still tries to be involved with our family members and being a good mother, wife, and homemaker. We know that much of her good results are from the many prayers and kind thoughts provided by all of you, our family, and friends. We appreciate these so much. We love you all,

Calvin and Janae

A Wonderful Sabbath!

Today was the General Conference of The Church of Jesus Christ of Latter-Day Saints. We have the bless of hearing the Prophet of the church and some of the Apostles. It happen every 6 months. The other months we hear from them through the church magazines that come out once a month. It makes me very humble and teary eyed. I feel so much love for the Lord. It reminds me of the love the Savior has for me and you! Each day is such a speical blessing.
I love my dad and mom so very much. It's wonderful to have a great childhood, great brothers...Randee, Keith and Brett. My sisters Nancy and Shauna. How I treasure them. My husband Calvin, has been such a blessing...having our children, Stacia, Jared, Bergen, Monique, Judson and Colton. Each so different and dear to my heart. I pray for each one of them daily and their spouses and children. I am so thankful they have testimonies, love going to the temple and are working on a wonderful family and life together.

We did not have much of a winter, no much snow at all. The day's have been cool and windy a bit but some beautiful sunshine. We should be moving into Spring. I hope I feel well enough to do some work outside. I have missed the yard work.

Let me tell you about my laters appt. It was in Seattle on the 14th. My MRI was good. The tumor that in on my left side behide my eye has not grown, could even be a tiny bit smaller. The problem is that the unflamation has grown. It started last June as 18mm, went to 24, then 36mm, and had grown on the 14th to 41mm. Not the tumor but up and around it. The doctors may think that it could be from treatments. Also the center of the back of my brain skull is partially pushed to the side. Mostly likly from radiation and cheme. I have to concider that it is a pretty good report. They gave me a perc. for steriods again. That is so so bad for your body. Things I have studied and asked Leona says "NO." We got the steriods. I decided that I had to pray about it first. After 3 days it was "don't do it." I talked to Leona and she is sending some Herb that is from plants. I will get it on Tuesday. I also have 12 over herbs to start up on. I got back on my Stem Cell that I was on for 5 months when I was diognoices (sp). Leona told me if would be wonderful for me to get back of it. Tuesday I did and throw up for 2 hours, Saturday the same thing so she sent me the new Stem Cell that just came out. I took it yesterday along with a bunch of food, same as on Tuesday and Saturday....so sick. I need to have it in my brain but it is not my friend..co no more of that. It's all very tough. I am trying. I know the Lord will help me if I am suppose to win this fight.

We are going to Bergen and Jason's for Easter. Calvin wants to get out for a couple of days...so It is also Jada's birthday. She is turning 3 on April 11 so we will party on carrots and broillo for me.

I wish you a wonderful Easter. Remember our Heavenly Father. Always say your prayers and know that I pray for all of you. I appreicate your prays for me too!

JANAE

From my mom:
"BLESS MY UNBELIEF"