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