Closing Thoughts

Jack's Journey...a blog to depict a cancer journey. A journey we didn't want to be on, but one we nonetheless were forced to embark on almost 17 months ago. With stage 4 cancer, we knew how it would end, but oh how we hoped and prayed for a miracle for my Dad. Although my Dad's journey here on earth has ended, I did not want the last entry in the blog to be the listing of the funeral arrangements. The blog was so much more than that, and so on behalf of my family, I wanted to share a few thoughts.

We started this blog so that the many, many family members and friends who had been touched by my Dad through all walks of his life could stay informed and join us in our fervent prayers for his healing and peace. And join us you did! I will admit, there were times when I struggled with "should we update the blog again ~ are people tired of hearing from us, would my Dad mind that we mentioned particular details, have we become too self absorbed with our trials, are we asking too much..." But every time we were thrown a new curve and we put the information out on the blog, we were immediately flooded with acts of kindness; notes, emails, calls or a visit, prayers or a meal, even simply a shoulder to rest a weary head on, all of these things and more spoke volumes of the love for my Dad and his family. We were blessed. And so, we thank you for allowing us to share our burdens with you. We couldn't have made it on this journey without all of you. We are forever grateful for the way modern technology allowed you to draw near us, soothe us, comfort us, re-fuel us, and help us press on to the end. We can't express our appreciation enough.

As my Dad would say "we are hanging in there". In the past month, we have been working hard to sort out a lot of the matters that come with the passing of a loved one. We have been busy making plans for the future of our family custom cabinet shop, and we have worked hard to get my parent's home on the market as my mom will continue on with plans to move near Jacquie.
And of course, we grieve. In this early part of the grieving process, it has pleased and helped us to hear from so many people who have shared with us stories of the ways that my Dad impacted them. Some stories we knew, others we are hearing for the first time. He was such an awesome man who was deeply loved.

While this particular phase of the journey has ended, my Dad will live on in our hearts, and through the legacy of wisdom and love he gave us.

With much love and gratitude,
Karen, Jacquie, Tami, Sandi, Jon and families

Funeral Arrangements

Following is the pertinent information:

Viewing:
Thursday, September 24, 2009
6:00 - 8:00 pm
Bucktrout Funeral Home
4124 Ironbound Road, Williamsburg, VA 23188
757-229-3822

Funeral Service:
Friday, September 25, 2009
Quantico Marine Memorial Chapel
10:00 am (everyone needs to be seated by 9:45 am)
*Please inform the Gate Sentry that you are attending the Jack Daniel Funeral at the Marine Memorial Chapel. Please also be prepared to show photo ID (driver's license/government ID)

Burial:
12:00 p.m. Friday September 25, 2009
Quantico National Cemetery

For out of town guests needing accomodations:
A special rate is available at the America's Best Hotel, 119 Bypass Road, Williamsburg, VA, 757-253-1663.
Please ask for the Friend's of Jack Daniel Rate of $40.00/night when making your reservations.

No more pain and suffering

Tonight at 10:05, our dear sweet husband and father entered into the Kingdom of Heaven. We are sad, but know that heaven is rejoicing.

We thank you all for letting us share our burden with you over the last 16 months. Your prayers, words of kindness, concern and mostly your love for us has sustained us all.

We will be working on funeral arrangements and will post them later on Tuesday.

With thanks and gratitude ~ Karen, Jacquie, Tami, Sandi and Jon

Very tough day

We believe that my Dad is starting to slip away. Please pray with us for a peaceful passing and a glorious welcome into the Kingdom of Heaven for our beloved Dad.
We can't predict how long this transition stage will last, but we are all right here with him, loving him through it.
God bless us all ~ Tami and Family

Painful News

Yesterday, we learned that the cancer continues to grow and spread. We are running out of time and options. I cannot even begin to express how sad we are to hear this latest bit of news. Jacquie and Sandi came to be here too while we process this as a family, and it good for us to all be together right now.
Currently my Dad is undergoing radiation to his spine, where the new metastases has landed. He will have a total of 10 treatments. The goal of the radiation is to stop the tumor from growing so much that it would push on his spinal cord, and cause paralysis. Once the radiation is finished we may try one more chemo; however, we are sorting through some pros and cons before reaching a final decision.
Thank you for keeping us all in your thoughts and prayers as we navigate through this painful and difficult time ~ Tami and family

A quick update

It is my privilege to be in Williamsburg with my parents this week. I relieved Jacquie's daughter, Lauren, who was a big help and huge blessing to my parent's with her youthful personality. She makes everyone around her smile with her natural good cheer and my mom and dad just loved having their oldest granddaughter here with them. Thanks, Lauren :)
My Dad is starting to feel somewhat better from the nasty infection he had. He is still tired and weak, but the infection seems to be under control and his kidney function has improved some. The main complaint as always is his swollen eye. The left side of his head above and around his eye remains very swollen and it causes him to have some fairly intense headaches.
This week he will have a PET scan, which will determine if the cancer has spread further. Please keep us in your prayers and thoughts as it will be a tense couple of days until the results are in. The scan is tomorrow and we will meet with the oncologist on Thursday for the results.
I will have more information toward the end of the week.
Tami and family

Not what we were hoping for

Dear Family and Friends ~ Thanks for checking back in with us. We have received some recent scan results and unfortunately they were not what we wanted to hear or what we were hoping for. A CT scan of my Dad's lungs shows that he has at least 10 new tumors there. Clearly the sutent has not worked to beat this beast back and we were so very disappointed to hear that he had not stabilized. On top of this, my Dad has another infection that has just totally wiped him out. He is weak and tired. The last two days he has been receiving IV antibiotics in the Oncologist's office, along with some saline to re-hydrate him. He is responding and starting to feel better, which is a big relief to us.
Further treatment options are currently on hold until he is feeling better and able to tolerate treatment. He also needs to have a full body PET scan so that we can determine if there are any other areas where the cancer might be materializing. One treatment possibility would be to move on to a chemo drug called Torisel. It is a chemo that is often tried next when the sutent has failed. It doesn't have an overly high success rate, but as we keep telling ourselves, someone has to be in the percentage that it helps -- so why can't it be my Dad! We won't know until we try and at this point my Dad is willing to give it a go once he feels better. So if we were to be asked what the major concerns and prayer requests are, that would be one of them - that he begin to feel better so that he can tolerate chemo. Another issue that has surfaced is that his remaining kidney is beginning to show signs of distress. He has been experiencing high levels of creatinine and so today he saw a kidney specialist. She is removing one of his blood pressure medicines that could be causing this, and we hope that a little bit of tweaking will keep him far away from having to start any dialysis.
I'll end this rather discouraging post with a glimmer of good news. The existing tumors that are on his skull have not grown, nor have any new ones developed. We are very grateful for that.
Thank you to all of you who have recently showered us with your kind words of encouragement. They are so welcome and are like a balm to our weary hearts. We are a strong family, but oh man we feel deeply. We vacillate between brave fronts and tears regularly these days. And so, it is comforting to us to be uplifted and surrounded by so much support as we soldier on. One of my dearest friends wrote to me today to tell me what my Dad means to her. She said that she has never met a more kind, wise, thoughtful and caring man than my Dad. I couldn't agree more.

Sutent - Cycle 2

The second cycle of Sutent is finished (a big YaY). Once again, the last part of the treatment cycle left my Dad feeling pretty lousy. While he wasn't plagued with a bacterial infection this time, he definitely had similar complications of low white blood cell and platelet counts and general malaise. I won't go into further details, but the side effects were the typical ones of someone on chemo - enuf said...
Jacquie, Sandi and Jon were all able to come down/up/ or over and help out during the latter part of the fourth week, and from now on we will make sure that someone is on hand to provide extra support to them during that time!
This week my Dad's brothers, Paul and Jim, Jim's wife Sue, and my Dad's sister, Marcia are coming to visit! It's always great to have company - while one might think that it would be difficult during this time, it's actually the opposite! No one expects to be entertained (gone are the days of sightseeing and tours!) and instead, everyone is so helpful! It gives my parents a break, and its nice for them to not always be focusing on the cancer and thinking about what doctors appointment is next in the queue. We have a very humorous family, and even when you aren't feeling 100%, it's hard not to laugh a lot! I'm guessing that a nice visit during this break from the Sutent will go a long way toward helping my Dad rebound quicker.
Thanks for checking in and continuing to pray that the next CT scan will show that the cancer has stabilized. ~ The Daniel Family

Back in the swing of it

Quite literally! As I type this update my Dad is out on the golf course hitting some golf balls around with his youngest brother, Robert. The last week has been better for him in comparison to how he was feeling a couple of weeks ago! He seems to have recovered from the bacterial infection and while he still suffers from fatigue, he was able to play in a golf tournament last week-end :) He is happy to be back out and about and his doctors always love hearing that he is feeling well enough to be out on the course. It's a good mechanism for gauging how he is feeling.
The results received on Monday from his latest MRI were positive. The last gamma knife treatment he received made marked improvement in attacking the new growth that had sprung off from the original skull tumor. It is hard to measure, but they could see lots of areas of tumor death and if they had to guess, they would estimate that it shrunk about 60 percent. The other two small tumors on his skull are still active, but have not grown any since the last MRI.
In the meantime, the second cycle of Sutent started this week, and so far he is handling the side effects okay. His white blood cell count is still not quite in the normal range and there was a slight drop in his platelets, both normal side effects from the Sutent. These are two areas that will be monitored closely over the next few weeks. We really, really hope and pray that this cycle of the Sutent doesn't end in chaos like the first cycle did!
The next measurement of how treatments are going will be a CT scan in late August. It will tell us how the Sutent is working and will hopefully show that the active tumors have shrunk. If not, it will be time to re-visit radiation options. But for now, a break from the radiation is much welcomed, and needed.
Next week my dad is going to see an Ophthalmologist who specializes in orbital surgery and treats both functional and aesthetic problems of the upper face and eye region. Among other things, he treats patients who have suffered from facial disfigurement and scarring from excision and reconstruction of cancerous lesions. It would be so great if he has insight into a way to treat all the swelling that my dad has around his left eye. My dad doesn't complain or say "why me" about the terrible hand of cards he has been dealt, but he does wish he could see out of his eye again. We remain hopeful that there is something that can be done to help him.
It's hard to believe that it is already late July! We are enjoying the summer months and the visits that we've been able to have with each other and with our extended family. All of my dad's siblings have either been to visit or are coming soon and my parents really enjoy these visits. They are such a nice diversion from the daily cancer grind. We know we are blessed to have such a close, loving family - and we don't take that for granted!
We hope that everyone is enjoying the summer and time spent with loved ones as well ~~ Tami and Family

Very Very quick update

Just wanted to take a brief second to bring everyone up to speed. Last week after the suspicion that maybe my Dad had lyme disease, and after taking mega antibiotics for that, his white blood cell count continued to plummet. This led to more tests and a blood culture on Thursday to determine what could be causing the decrease in the white blood cells. There is a long name for the type of bacteria that they found in his blood, that I can't remember how to spell or pronounce at this point, but once this was determined, he was put on yet another antibiotic to try and knock the infection back. He has had a couple of rough days, but we are glad to report that he is back on the upswing. While his white blood cell count isn't completely back to normal, its climbing in that direction, and his platelets and other counts are now normal. He will continue on antibiotics for another week and hopefully at the end of that he will have all normal blood work. Other good news is that he tested negative for Lyme disease, so we were very relieved to get that news today as well.
I just spent a nice couple of days with my parents and enjoyed being able to visit with them, watch fireworks from their back porch and help them out in small ways. Its always an honor to be able to be with them. Provided there isn't anymore drama in the next few days...we should have results of his July 10 MRI to share sometime early next week. ~~Tami and family

As if dealing with cancer isn't enough...

My Dad has had an eventful week! On Monday he was in for a regular check up when it was discovered that his white blood cell count and platelets were both a bit low. This is something that they will be vigilant about now that he is on the Sutent, and it is not totally unexpected for this to occur. While there, he also had a bite on his leg that the nurse practitioner checked out for him and since it seemed to be infected, and with his counts on the low side, she prescribed a course of antibiotics for him. However, a couple of days later he began to feel very sick. We don't know if it was the antibiotic itself, or the combination of the antibiotic and the Sutent that caused this, but regardless he was feeling awful by Thursday. He was supposed to have had an MRI on Friday to see how he is faring with his treatments, but he was feeling so poorly that this just wasn't possible. Instead, he went back to the doctor's office where they re-hydrated him and took a more detailed look at his bite. It turns out that the bite may be an infected tick bite and as a precaution, they are testing him and treating him for Lyme disease. The test results will take about 5 days to receive, so we will know something definitive by mid to late next week. As of today, he is feeling better and is mostly just suffering from fatigue now.
Every family probably has a "googler' these days, and it's me in ours. So of course I have googled Lyme disease. I'm relieved to see that if in fact he has Lyme's, it's very treatable and the complications that we hear about are usually because it goes undetected for a long time and is therefore left untreated.
Jacquie and Louis are visiting with my parents and so thankfully my mom has had some help with picking up prescriptions and food and general things like that. My dad sadly missed out on playing golf with them this morning though :( Hopefully he will be feeling up to getting back at it sooner than later, there is a 4th of July tournament that he has his sights set on, so we'll keep our fingers crossed!
The MRI that was cancelled on Friday is rescheduled now for the 10th. In the meantime, my dad will be followed closely in the doctor's office and we hope the infection will resolve and that his strength will be restored. Thanks for checking in again and for keeping our family in your thoughts and prayers! Lovingly ~ the Daniel family

Mid June and holding steady

So far this new chapter has just been new, not horrible. It's been two weeks now since my Dad started on the oral chemo drug Sutent, and he is doing well in terms of side effects. A yellow tinge to his skin is the only side effect that he is experiencing at this time. Since there are far worse things....I think that having some skin discoloration is not too hard to sallow - I mean swallow (okay, boo hiss --I know I know, I couldn't help myself) Anyway...I was researching on-line why the skin discoloration happens and I didn't gain much insight, one theory was that it could be because of the drug's color, and another was that it represents that blood levels of the sutent are adequate enough to reach the skin and other organs. Either way, it doesn't sound like an alarming side effect. A positive side effect is that my Dad's appetite has increased. This is great, as he was having trouble with his appetite in the month or two prior to starting the sutent. His taste buds had been altered from the radiation and he just didn't have much of an appetite. The increase in appetite from the sutent, in combination with his taste buds slowly being restored, have led to him being able to keep his food intake up and blood sugar levels in better range. Good stuff!
Next week he will have his first scan since starting the sutent and we will be able to get a good idea of how it is working. We hope that the scan will show that the existing tumors have shrunk, or are at least stable, and that there has been no new progression of the disease.
Enough medical stuff and a little bit of good family news!
Recently we have had the following events occur: Megan and Lauren both finished up their first and last years of College, respectively. Amanda graduated from 8th grade and Kyle graduated from kindergarten, Taryn finished 5th grade, Carsyn finished 3rd grade and Matt finished the first year of his electrician's apprenticeship. Yay everybody :) Jon's two beautiful girls are doing just great as well, they are growing so quickly!
In addition, my parents have had several special visits lately! My cousin Wendy and her family stopped in on their summer vacation route; Gary and Kathy Young and Gordon Hill, long time friends from Plymouth Haven Baptist Church, came down from Northern Virginia for lunch; and currently Jacquie is in from Tampa for an extended visit. This weekend they will all meet up with Sandi and her family and celebrate Father's Day at the Quackenbush River House. We really are blessed with close family and friends and we try and always remember that in the midst of dealing with the crazy hectic cancer life. -- Tami

Hard to believe it’s been just a little over 12 months since we first heard the scary words metastatic renal cell carcinoma. Since then, it has certainly been a journey that has led my family toward absorbing a lot of frightening information; meeting challenges; living lives full of hope and love; and being forever grateful for having a cache of supportive, praying family and friends standing with us in this battle.

This is a lengthy update, so for those of you who are bottom line type people here are the main issues/concerns:

• That the new drug treatment (Sutent) will work to reduce the tumors on my dad's skull and slow the progression of disease lurking anywhere else
• That he will experience little to no side effects from the Sutent
• That the radiation treatments to his lungs will get rid of the two existing tumors and the third suspicious shadow will resolve
• That there will be successful treatment available for his eye edema at Duke University
• That my parents will be revived physically, emotionally and mentally.

For those that like more detail - read on:

This past Friday, we learned several new things. My dad's team of doctors reviewed the scans from his latest MRI, and the consensus is that the one spot that was thought to be in his brain is in fact on the skull and NOT in the brain. Needless to say, this was good news to hear. Yet once again, our excitement over good news was tempered by finding out some other unwelcome news. Where last week we thought that these new spots on his skull would be treated with additional gamma knife, we have been informed that this will not be possible. In order to perform the gamma knife radiation, a guiding device that resembles a halo is placed on my dad's head. However, in the exact spot where the halo would be placed, there is new bone growth regenerating on his skull. This new bone is soft, and it has been decided that it is too dangerous to run the risk of puncturing the bone with the halo and causing damage to his brain. Consequently, we now find ourselves at a new junction.

After careful consideration, it has been decided that it is time to start my dad on an oral anticancer drug called Sutent. For those so inclined, information on sutent can be found at http://www.sutent.com/. In a nutshell, Sutent is a drug designed to block tumor cell growth by targeting and cutting off the blood supply that feeds the tumors. The overall goal is to stabilize the cancer and slow the progression of the disease. (Insert my layman's disclaimer here!) Treatment involves cycles of 4 weeks on the medicine and then two weeks off. There are numerous potential side effects, however most of them can be managed fairly well. We hope that my dad will be fortunate and experience few, if any. Many people have seen good results with Sutent and it goes without saying that our hope is that my dad will be among the ones who have achieved successful results.

The last radiation treatment for the two spots on my dad's lungs will be this week. There is still a suspicious shadow on his other lung that is being observed; a decision on whether to go ahead and zap it with radiation or to wait and see if the Sutent has any effect on it is forth coming.

Last update is on my Dad's eye. It continues to be very swollen and bothersome. He is in the process of setting up an appointment at Duke University Medical Center to see if they may have any Neuro-Ophthalmology treatment options available for him.
My parents have had so many appointments lately and have had so much information to process. Not surprisingly, they are weary. Yet they remain committed to each other and their will to face all of their challenges head on. They are an inspiration. ~
Tami and family

Challenges

This was another rough week for the Daniel family and in particular for my Dad. Monday's procedure started with another MRI, which surprisingly showed two more spots - and this time one of them appears to be in his brain. The other one is around his cheek area. It had only been two weeks since his last MRI, so we were stunned. It doesn't matter how many times we tell ourselves on an intellectual level, that we know that cancer is unpredictable, it still slams us hard when we hear more bad news.
The actual gamma knife procedure on Monday turned out to be much longer than the anticipated 4 hours as it took a long time for the planning of the procedure to be done after the MRI, and in the meantime an emergency patient was slipped in before my Dad. So, he was at the Radiosurgery Center from about 6:00 am until after
8 p.m. He wasn't able to eat all day and was feeling weak and worn out by the time they finally arrived home. However, he perked back up on Tuesday, and off they went for the fitting for his frame for the lung radiation procedure. On Thursday, he had his first radiation to the two spots on his right lung - we were happy to hear that they will be able to radiate both spots at the same time after all. Now, instead of six trips for the lung radiation, it will only be three.
In addition to all this, next week he will have another CT scan to check a suspicious spot on his left lung that they wanted to watch. Then sometime in the next few days, a plan of action on how to treat the two new spots will be made (probably more gamma knife) and some careful thought and decisions on the next course of overall treatment will also be considered. Please pray for my Dad's strength, and that we are headed in the right direction for determining the next steps. Honestly, it's been a bit discouraging that the cancer has been so aggressive lately, and its obviously time to consider some other treatment options. We appreciate everyone's care and concern for not only my Dad, but for the whole family as well. It's been a tough week...

Here we go again ~

It's the eve of May 18th and tomorrow is the next scheduled radiation treatment. This one is another gamma knife procedure, aimed at attacking the new extension of the original tumor. The procedure takes at least 4 hours from start to finish, and my Dad will be tired afterwards. Please pray with us that they are able to really get in there and put this tumor down once and for all!
The trip to Phoenix was great! My Dad did well with the traveling and both my parents enjoyed being back in Phoenix. They have a profound love for Phoenix and they had a good time re-visiting a lot of their old haunts. The highlight of the trip was a mini family reunion with my Dad's two brothers and almost all of their families - we were about 30 in total. My cousin Donny and his wife Erica graciously opened their home to all of us and we had a great time catching up, eating and most of all laughing together! My Dad took a few moments as the family patriarch to address everyone and to remind us all to seize the moment and take advantage of all of life's opportunities. He has definitely modeled that for all of us, and he also wanted to remind everyone of how much he loves his family and is proud of each and every one of us -- besides being a family with a great sense of humor, we are also a bunch of saps, so there wasn't a dry eye in the house as we all reaffirmed our love for each other and my Dad. Thank you, Donny and Erica, for making our "reunionette" possible.
We also got a chance to visit with Marsh Tremble, my parents very good friend and best man at their wedding. That was pretty cool since it was a trip to celebrate their 50th wedding anniversary! We drove by the first house they lived in together, old high schools, places of work, my dad's paper route etc.. - it was a real trip down memory lane!
Well, just wanted to give everyone a quick up date -
lovingly, Tami and family

A few Updates

Hi all - thanks for checking in again with us.....I wanted to give you an update on some things. A few weeks ago, we had thought that the original skull tumor was completely dead and it wasn't expected to give my Dad any more problems. As we've mentioned before, cancer has a mind of its own that can totally knock you off course, and that seems to have happened yet again. This week my Dad found out that the original tumor has developed a new extension that has moved back over toward his left eye. We are discouraged that all of the cells associated with it just don't seem to get radiated. Kidney cancer is very resilient....but so are we. Along with the radiation that my dad will be getting to his lungs over the next few months, he will also receive a gamma knife treatment to that original skull tumor. Please pray with us that they will finally get all those microscopic cells zapped and that there will be no more expansion of that tumor.
Please also pray for my mom and dad's spirits and strength as they continue on with this journey. They are both quite tired as they have had numerous appointments to attend over the past two weeks. Recently added to the already busy schedule is daily massage therapy for the swelling around my dad's left eye. Every day for about an hour he has a massage and then his head is wrapped with a compression bandage to try and help reduce the swelling. They have seen some minor improvement, but perhaps the reason they haven't experienced more improvement is that unbeknown to us, the tumor had actually been growing. Nevertheless, I think the massages are relaxing and they have developed a nice friendship with the woman who is doing them. They have to drive over to Newport News (about a 30-40 min drive each way from Williamsburg) for these appointments as well as needing to be other places for various other appointments, so they have had an exhausting few weeks.
The other night, my Dad attended a dinner for a golf tournament that he has participated in for the last few years, but was unable to do so this year. While there, he received a standing ovation from his friends and fellow golfers and it was just really nice that they honored him like that - so thank you to all of my Dad's golf buddies who care so much for him and make him feel so special!
The doctors have given their okay for my parents to continue on with their travel plans to Phoenix for this coming Friday, and so they are looking forward to heading west and to visiting with my Dad's two brothers and their families. This will be a nice break before all of the radiation treatments start up again.
The latter part of May, and all of June and July look like they will continue to be very busy times. My sisters and I are going to try and get down and help out as much as we can....but if there is anyone in the Williamsburg area who can also check in with my parents to see if they need any assistance, my siblings and I would be very grateful!!! Thank you all for your support and kindness --- Tami and family

PET Scan results

Some good news, some not so good. I'll get the not so good part out of the way....The spots that showed up on the CT scan last week are in fact cancerous. There are actually only two, both relatively small in size (1.5 - 1 cm). This means that the radiosurgery center will be welcoming my Dad back for 6 more rounds of radiation. Because the dose of radiation is high, they are unable to treat both sites at the same time. He will have three treatments in June to one of the tumors, and three treatments to the other in July. The first tumor that was found on his lung over the Christmas Holiday is gone now so that was GREAT news to hear and it is encouraging to know that the type of radiation they are using is bang on (I would say spot on, but maybe that's too much of a pun???). Other news from the PET scan is that the two skull tumors are DEAD and the skull bone in that area is no longer fractured. Sandi was able to go with my parents to the Dr. visit today and she described it as overwhelming to see the scan from a year ago compared to yesterday's scan. It drove home the point that we are incredibly blessed to have skilled Doctors on my Dad's case. The radiologist oncologist admitted today that when they first got my dad's file last May, they weren't at all sure that they would be able to wrap themselves around killing that tumor. Scary to think about, but glad we are sitting 11 months on the other side of it with good results. So while it is discouraging to hear of the new small lung tumors, they don't cause alarm to the Doctors in the over all scheme of things in the cancer world. Accordingly, a treatment plan is once again in place, and we keep pressing on.
As far as the edema around his eye.....well, its possible that it may never go away due to the scar tissue that is now built up in the area behind his eye. It is extremely difficult for him to open his eye and he is going to explore the possibility of wearing an eye patch so that he is not constantly straining to see out of. I'm sure he will look mysterious and debonair :) Another bit of news today is that he will likely be on prednisone from here on out. He will be attempting a different dosing schedule to try and cope with some of the side effects he experiences from it and we hope that will be helpful.
I'll end with this last piece of news - the anniversary trip to Arizona will take place as scheduled and it should be a great visit with the Western side of the Daniel Family!
Thanks for checking back in and for the continued prayers - we are hoping that his next 3 month scan will be all clear and provide a needed break from treatments! Love ~ The Daniel Family

Easter

A little late in the day, but Happy Easter wishes from all of the Daniel family. We are much slower to update things these days, as we find ourselves in the lull between tests. Please know that even remembering my dad in the most general of prayers is always, always much appreciated.
Last week my Dad had a CT scan to take a look at the function of his remaining kidney. The good news is that the kidney appears to be functioning well, the not so good news is that there were an additional three nodes that were seen on the base of his lungs. We don't know if the nodes are cancerous, as the scan was done without contrast, but on Tuesday of this week, a PET scan will be done that will light up if these nodes or any other areas found, are a spread of the cancer.
Of course we hope that cancer has not spread further, and we appreciate all of your prayers for this. Also, my Dad is very tired from the radiation treatments and his taste buds seem to have been affected from the radiation treatments. He has lost weight due to this, and he is trying to sock away more calories through yummy milkshakes etc.
As many of you know, my parents just celebrated their
50th Wedding anniversary and are hoping to make a trip back to Phoenix, where it all began, in a few weeks. We hope that medical treatments won't prevent them from traveling. Thanks for your continued support and love in all things - especially on this day as we are reminded that He came from heaven to earth to show the way, from the earth to the Cross - our debt to pay. From the Cross to the grave, from the grave to the sky...Lord, we lift your name on high! God bless you all - the Daniel Family

Shrinking tumors :)

Hello all!
We are happy to report some good news regarding the skull tumors. Yesterday, an MRI showed that both tumors located on the skull are shrinking. This was encouraging news to hear for sure! The original tumor continues to shrink from this past summer's radiation, and the newer second tumor is also beginning to show a response to the radiation received in January. Another MRI will occur in 6 weeks to continue monitoring the response to the radiation and we hope to hear additional good news then.
Other things on the schedule in April include a full body PET scan to see if the spot on his lung is responding to the radiation it received as well, and to ensure that there isn't any new activity occurring elsewhere. There will also be a scan done on the remaining kidney to monitor its functioning. Needless to say, there is never a dull moment in the test, treat, wait and see regimen!
The radiation has drained my Dad's energy level, which is a pretty common side effect. Even so, he continues to run a business and play golf when he can ~ pretty amazing!
My parent's trip to Hawaii was good. They enjoyed spending time there relaxing; however, they did find the trip back to be a bit hard with the long travel period and time change. They have decided to travel a little closer to home in the future, and are headed to Tampa in two weeks; right after they celebrate their 50th Wedding Anniversary on March 26th! They are thrilled to reach this milestone and to celebrate the life that they have shared together. They are both such excellent people and the four of us kids, and 9 grandchildren are all proud to be a part of the heritage that they created together!
As always, thank you for your prayers for my Dad's strength and healing. I'm sorry that we have been remiss in updating the blog lately, but please know that we are so appreciative of all of you who check in on us, leave messages, send cards, call, and prayerfully stand by us. ~ Lovingly, The Daniel Family

Final round

Thursday was the third and final round of radiation to my Dad's lung. All went well and now we will wait for the results.
He also saw the Ophthalmologist this week, (the first person to note that there was a problem last May), and he got a good report that the eye looks totally normal now on the inside. This is further indication that the original tumor has shrunk. The trouble with the swollen eye is something called eyelid edema. I know he must wish he could drill a whole and drain all that fluid out of there!!
Finally Finally, the trip to Hawaii commences tomorrow! My parents are excited to get to go on this rescheduled trip. A lot has happened since it had to be postponed and its really good to see them be able to go. Please pray that they have safe travels and no unexpected complications to deal with. They have always loved Hawaii, from all the way back to the time we lived there, and they'll be happy to be back in that tropical paradise once again.
Thanks for checking in ~ The next scheduled event for my Dad is another MRI on March, 9. In the meantime, I'm sure there will be some Hawaii pics and a recap of their trip to post. ~ Tami and Family

Round 2

Round 2 of the radiation to the lung was this week, and it went well. Swelling of the eye is a constant problem though. It must be so frustrating!
My parents had a great time on their trip to Tampa. Louis'retirement ceremony was very nice and the retirement party was even better! Louis presented my Dad with a shadow box full of medals and ribbons etc. that Dad had earned over the years during his own Marine career. He was quite touched that Louis would take the time to honor him at his party - he felt like he was having his own retirement party all over again! Thanks to Louis and Jacquie for doing that and to mom for slipping the medals and mementos to them! I have posted some pictures of the retirement events and you can see the treasured shadow box in a few of them.
Thanks for the many prayers - keep praying that the cancer stays away and that the swelling would finally recede ~~

Radiation update

Today, Jan. 20, my dad had the first round of radiation to his lung. All went well and he doesn't seem to be experiencing any side effects. He isn't really expected to, maybe some tiredness, but that's all that is anticipated. His eye remains swollen and that is a big challenge right now. He doesn't complain, but its clear that it's a huge discomfort for him.
As mentioned previously, my parents head to Tampa on Thursday. We hope that they will travel well and have a great time while there! Thanks for checking in with us ~

Monday, Jan 13th Info

A quick update on today's activities. The day started out around 4:30 a.m. in order to get to the Radiosurgery Center for 6:00 a.m., so it was quite an early start! After being fitted with a frame for his head, an MRI was done to make calculations for delivering the radiation. They had to wait awhile for this to be completed and finally around noon he was taken back for the actual gamma knife procedure. Just to give a nice visual - Star Wars is a big hit with Sandi's 5 year old son Kylen and for Christmas he got a mask and several different colored light sabers. We all got to play "Star Wars" many times over the holidays and apparently with the frame on his head, my dad looked like something straight out of Star Wars and would have been a very worthy opponent for Kyle! OK - back to the update, after the procedure was done, they kept him for about another hour or so while he recovered, and then he was able to come home. He had a slight headache and was starving, other than that it was just like a day at the park - OK, slight exaggeration, but really, overall he is doing well and can resume normal activity after 24 hours.
The MRI that was performed today was more detailed than the one he had on 12/31, and the neurologist could readily visualize the necrosis taking place in the first tumor, so that was great to hear.
Tomorrow, he will return to the Radiosurgery Center to be fitted for the body mold for the synergy radiation to his lung. He will have the 1st treatment on 1/20, the next one on 1/29 and the last one on 2/5.
In between the Radiation treatments of 1/20 and 1/29, my parents will get to make a trip to Tampa, FL to attend the Marine Corp retirement ceremony of son-in-law, Louis (Jacquie's husband). They are glad to get the green light to go ahead and attend as they are extremely proud of not only Louis for his service to our country, but of Jacquie and all she has done to support Louis and raise two great kids as a military spouse. So a big Marine ooh-rah shout out to Louis as he completes his 28 year military career! Thank you, Louis for your service and commitment to our great Country.
We didn't get many pictures at Christmas as it was kind of a whirlwind event (we were busy playing Star Wars after all!), but we'll make sure to have pictures from Louis' retirement to share with everyone.
We appreciate continued prayer for successful results from the radiation treatments and that this would be the last time the cancer makes an appearance. It's enough already....

Bumps in the road

This has been a bumpy week, hearing results that we weren't expecting and processing new information. Unfortunately, the Pet scan did show a small(1cm) metastatic spot on my Dad's right lung. This does not mean that he now has lung cancer as well, it means that there is a cell from the original kidney tumor that has materialized in the lung. Encouragingly, this is the only place that "lit up" on the scan, and there are high hopes that treatment with Stereotactic Body Radiosurgery (same type of radiation used this summer) will bring about good results. This type of radiation uses precise, pinpoint radiation beams to converge on the cancerous tumor from many different angles. Because it is so accurate, it minimizes the chance of damage to the healthy tissue surrounding the tumor. Large doses of radiation are delivered to the tumor over a period of one to five days, which is better than the older standard of weeks of daily radiation. There is about a 90 percent success rate associated with this method of treatment. Kidney cancer is so persistent that this will probably become routine, i.e, find a spot, zap it, wait, find another spot, zap it, wait again etc etc. This was mentioned to us at some point, but I think we all stuck that somewhere in the back of our minds, thinking it really wouldn't happen in "our case". As we know realize, we haven't been spared this exercise and we are wrapping our minds around yet another new normal way of life. We remain ever thankful that there are treatment plans available, and that over all my Dad feels ok. The diabetes is under better control, and his blood pressure is good. So at the end of a long week, we have two new tumors identified and two new treatment plans in place, and as it seems to be our mantra - we press on. The Gamma Knife surgery on Monday morning is the next event on the schedule, and we'll let you all know how that goes next week.
I just wanted to take a quick moment to address the many expressions of gratitude that have been made about the blog - its so overwhelming to us to have so many people on this journey with us to even have the need for a blog, that really the gratitude is ours extended to each of you reading this. Thanks for caring about us, loving us and praying for us ~ The Daniel Family

Its true cancer has a mind of its own ~

And, despite our recent optimism, we have received news that my Dad has a new tumor on the left side of his skull. Due to some new areas of swelling, the MRI scheduled for the 8th was moved up to last Wedensday. We received news late on Wed. that the MRI showed a new tumor had developed, but because of the holidays, we weren't able to get additional information until today. Here is what we now know, in layman's terms of course. (I feel like the doctor should review this to make sure I'm conveying everything correctly, but here goes...)
Several Doctors have now had the opportunity to review the MRI and have come to a consensus that this is not a new cancer metastasis, which is significant. They believe the cells were always there, but were located deeper than what could be seen. The radiation that he received this summer would not have gone deep enough to hit these cells, as they radiated as far in as they felt they could go and not damage the brain. Simply put, these are exsiting cells that have formed into a tumor at a new site in his left temple.
This new tumor is treatable with Gamma Knife radiation, which is different than the type of radiation they used this summer. They will use this type because the tumor is rapid in growth and is getting dangerously close to the brain. If necessary, surgery is an option, but they would like to proceed with the Gamma Knife treatment as it is less invasive/risky. He will have this procedure next Monday, January 12th at 6 am. The results won't be known for another 3-5 months, however, even without the expectation of immediate results they will be doing more frequent MRI scans. This will help to discern if there have been other undetectable cells lurking around that decided to morph into yet another tumor and provide swift treatment in such case. All of this will be clarified at a face to face Doctor's appointment this Wedensday (1/7). It will be good follow up as there will have been some time to process this information and a better opportunity for questions and answers, so if I've misrepresented anything, we'll let you know!
The following is information on the original tumor: It has shrunk about 30%. They would have liked to have seen greater reduction at this time, but do not believe that the results are abnormal in relation to renal cell cancer's typical response to radiation. They still expect to see continued dying of the tumor and are hopeful that within the next 6 months, the total reduction will be around 70 percent.
Lastly, the full body PET scan is still scheduled for this Thursday. We are hopeful that it will show no other cancer anywhere else in his body.
All in all, there are nuggets of good news mixed in with the bad news of another tumor and we are pressing on. We are thankful that there are treatment options to continue fighting the cancer. We pray that the new tumor responds to the Gamma Knife radiation, that the original tumor continues to shrink, that there are no more lurking cancer cells and that the PET scan is clear. Thank you for your continued love and support - we will provide another update later in the week. ~ Tami and family