We saw the oncologist today to discuss options.  I had shared with a few people that we discovered last week, our insurance will not pay for  clinical trials.   We were supposed to start a new treatment this week.  So now we  have a new game plan.  First of all, Bill will get a blood transfusion tomorrow if they can locate a match for him.  His hemoglobin was down to 8 ( normal is between 13-15) which is causing him to be anemic and extremely tired.  We will do that at the Brown Cancer Center in the morning.  

In the meantime, Dr. Miller (the oncologist) is going to contact the Dr. at Humana in charge of the "denials" and see if he can convince Humana to cover the clinical trial.  He is also contacting the National Cancer Institute in Bethesda, MD to see if Bill  might qualify for one of their trials which would be paid for with grant money.  So we are still in a holding pattern, although Dr. Miller wants to get something going within the next week or so.  The only other chemo option seems to be basically more of the same treatment he had last fall and winter, which as you know was extremely tough on him.  

Needless to say, we are feeling pretty down at the moment.  Hopefully, the blood transfusion will provide Bill with  strength and energy and allow for some normal activity for a while.  It's been such a good summer for us so far and we're grateful, it's just that we would like to see the good continue.  

I'll keep you posted.  Love, Holly

Next Steps

This morning we saw the oncologist, discussed the results of the latest PET/CT scan and determined our next steps in this ongoing battle against melanoma.  The scan showed some small spots in the bowel, which we knew from the last surgery were there.  It did not show signs of cancer anywhere else, still no spreading, which is  great news.  

Bill's vital signs are good, he has gained a little weight over the past few weeks and he is feeling pretty strong.  Given that, he has decided to take part in a clinical trial using the drug Ontak.  According to the Docs, Ontak is a drug that is designed to retrain one's immune system so that the immune system will fight the cancer cells.  The side effects are not as debilitating as chemo and the treatment is done out patient--no hospital yea!!  There are several preliminary tests that Bill will need to undergo in order to qualify for this clinical trial (to ensure that he is healthy enough to handle it) and if he qualifies the treatment will begin within the next couple of weeks. 

Although we are not looking forward to more treatments that may cause Bill to be weak and/or tired, we are grateful that the cancer is still contained.  He will undergo two cycles of treatment which will take about 2 months, and then he will have another PET scan.  If the films indicate that the treatment is working, he will have two more cycles.  If not of course he will stop the treatment and we will have to look at another strategy.  

We are trying to take things one day at a time, getting out whenever we can, spending time with family and friends.  It's not as easy as you might think to "live in the moment" especially when you have been a planner all of your life.  It has been so great to see so many of you as we have been able to get out.  

As always, we really appreciate your positive thoughts and prayers.  Please keep Bill in your prayers as he begins this next battle.  Hope to see you soon.  Holly  

Folly Beach Vacation

I have been meaning to get to this blog update all week, but the good news is we have been having so much fun at the beach that I did not want to come inside and write.  We got here, Folly Beach , SC on Saturday, June 27 and unfortunately it's already our last day.  The weather has been perfect, sunny and hot all week.  Bill got in the ocean a couple of times and he has been able to enjoy the sun and sand with us all week.  We feel extremely blessed.  We've had a big crowd with us, 15 of us all family and I can honestly say we're all still speaking to one another.  It has been just the break we all needed.  

Fanny was unable to come with us to the beach, but she has been having a wonderful time at home under the care of our friend Annie Herbert so we feel sure she is in good hands.  In fact, I'm a little worried that she may not want us to come home (Fanny not Annie) due to the fun filled week she's had.  

We will hit the road tomorrow and be home by Sunday afternoon hopefully.  I know your prayers and positive thoughts must be responsible for giving us this week of normalcy, it has been so great, Thanks.

Relay for Life

This past Saturday was the first annual "Cornhole" Tournament Fundraiser for the American Cancer Society in honor of Bill held in Northern KY at Amy and Troy's.  It was a huge success and raised about $1000 for the day.  Thanks so much to everyone who attended and/or donated on behalf of Bill.  We were blown away by the outpouring of support.  Everyone seemed to have fun, the weather cooperated and the food was delicious.  

Next Saturday we hope to return to Northern KY for the Relay for Life where "Bill's Lifeguards" will be among the many teams walking and running to raise money and awareness for cancer.  

We have two more weeks until it's time to leave for our beach vacation, and we're counting down the days.  Bill has not had much energy lately and he doesn't have much of an appetite.  We're not sure what's going on exactly, but we saw our surgeon last week and he wants him to have some blood tests run this week.  Hopefully, the docs will be able to give him something to help increase his appetite.  We're praying that this trip to the beach happens, we all need it.  

Right now, the plan is still to have another PET scan in July as soon as we return from vacation and then begin another round of chemo.  Of course in this battle everything is tentative, plans change quite often.  

So for now we're hanging pretty close to home, taking in a movie now and then and trying to get Bill stronger.  As always, thanks for your continued prayers and positive thoughts.  Holly

Happy Memorial Day

We hope everyone is having a safe and relaxing Memorial weekend enjoying family and friends.  We are certainly trying to make the most of it.  Bill continues to heal from his surgery and is getting stronger each day.  He is taking longer walks with Fanny and me and even participating in a little yard work.  

He has a follow up appointment with the oncologists tomorrow to discuss "next steps".  We are hopeful that things will continue to go our way and we will get to the beach in 5 weeks.  We're also looking forward to participating in the Relay for Life (Bill's Lifeguards) on June 20 up in Northern KY with the kids.  

I am no longer working at U of L.  Everyone there has been so wonderful and I miss being a part of the College of Ed, but I decided I needed to be a full time nurse for now.  So we're trying to take advantage of the freedom and time, just doing things we want to do.  The stronger Bill gets, the farther we can reach.  Travel is still a part of the long range goal.

Please keep in touch, we love to hear from you.  Thanks for your continued positive thoughts and prayers.  Holly

Home Once Again, Yeah!!

Bill was discharged from the hospital yesterday.  We have been able to enjoy a very nice Mother's Day weekend at home.  He is feeling pretty good considering he still has staples in his belly.  Things seem to be progressing in the right direction for now.  Keep those positive thoughts coming his way, they seem to be working.  

We are scheduled to go back to the surgeon on Tuesday morning to have the staples removed and make sure everything is still going according to plan.  So, for now we are enjoying this beautiful weather, our family and friends and taking it easy.  Your cards, letters, emails and phone calls are always so kind and encouraging.  Thanks for continuing your support,  it means so much to both of us.  

We hope to get back to working out and getting around in the "hood" soon.   Holly

Update

Bill continues to heal and make progress, we are hopeful that he will get to go home very soon. He has been given the go ahead to eat soft foods so he had a cheese omelet this morning.  If he is able to tolerate the soft foods, we're in good shape and should be given the okay for discharge.  In the meantime, we are trying to keep a positive attitude and enjoy the amenities here at University Hospital.  

We'll keep you posted on the his progress and let you know when we get home.  He is anxious to see his Fanny, she has been vacationing at Emily and Eric's for the week.  As always thanks for keeping us in your prayers.  Holly