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