The Nickster

Words could never adequately express how grateful Ernie and I are for Nick being here at home with us as we devote this year to battling myeloma. He willingly, and without hesitation, left his new life in California to return to the east coast and help us.

From yard sales,

to yard work,

to digging fence posts,

to entertaining and holding nephews and neices,

to wiring and all sorts of handyman work,

to keeping us laughing,

to working at his rather usual job very late at night,

to moral support,

Nick has been there for us every step of the way. He is a son every parent could be proud of and we are so grateful that God blessed us with him some 24 years ago. His sense of humor, quick wit, unselfish heart and willingness to help however and wherever needed, are traits we love about him. He has matured and taken on alot more responsibility these past 8 months, and it is a joy to see him growing into the man we dreamed he would be. Hopefully he will be able to continue enjoying his passion for traveling to various worldwide destinations such as the jungles of Central America,

and then eventually settle down and pursue dentistry and orthodontics in the future (yes, this is primitive denistry at its best!).

We love you Nick and thank you so much for walking with us during the good and bad times.

Wordless Wednesday: Guess Who?

Disability Approved!!!

We received some great news last week on Social Security Disability. When diagnosed with a plasmacytoma tumor in January, I applied for disability. We had heard that the approval process can take about 2 years, and almost certainly requires the assistance of a disability attorney. Over the last six months, I have been proactive in contacting and providing information to my disability determination administrator. We knew only 10% of applications get approved the first time, and wanted to do everything we could to be considered, especially since we had not retained an attorney.

God's perfect timing prevailed, and just before going to Duke to begin the transplant process, I received the official letter stating that I was approved for long term disability! The true blessing of this approval is that we now have a path to medical insurance coverage for 2011 and Medicare in 2012. This also eliminates our financial dependence on unemployment benefits which have been so uncertain this year. We praise the Lord for this decision and for His perfect timing, relieving me of this burden before transplant. Thank you so much for your prayer support...the Lord is faithful.

(As you can tell, Samuel and I were pretty excited!)

If you have faith as a mustard seed...nothing will be impossible for you. Matthew 17:20

Two Days at Duke

We are home again and all procedures at Duke went so smoothly. We were very impressed with the medical care Ernie received from the doctors and nurses there and are happy that he only had to spend one night in the hospital. The Great Physician is at work!

Thursday morning his port-a-cath was replaced with a Hickman catheter. We were sad to see his "port" go, because it was totally invisible under the skin and it made it so easy to draw blood and receive chemotherapy. The new catheter went in the same place, but has two external lines for giving multiple medications. It will be removed after we come home from the apartment in September sometime, but until then, I have to be "nurse Linda" and take care of it, changing the dressing and flushing the lines.

Port-a-cath under the skin on upper right chest

Hickman catheter

After recovering for a bit in radiology, Ernie was transported upstairs to the Transplant Unit on the 9th floor. He received fluids and anti-nausea meds, then the high dose chemotherapy drug, Cytoxin, was started, finishing up at about 6:30pm. Never did he experience any nausea, he ate a good lunch and dinner, and the drugs made him sleep quite comfortably. Wow, PTL!

We were on our way home by 3:30pm on Friday and are so very grateful for all the prayer support, being fully convinced that is why Ernie did so well. He will rest and stay on anti-nausea meds around the clock here at home for the next 3 days, and we will head to the Cancer Center on Monday for labs. His immunity will be compromised now and we will have to be very cautious about what he is exposed to through the environment and his diet. No more fresh strawberries, cherries, and blueberries...boo! One surprising "no no" is black pepper; it harbors bacteria in the peppercorn.

Many thanks to Jamie, Tara and the Sams, as well as Grandma and Nick, for being there with us during and after the procedures, and to all those who were at home and work praying. We are now a little further down the road to transplant and ask you to continue to pray in the weeks ahead for the specific requests we listed, especially no fever or infection. THANKS SO MUCH!

Today's the Day...

Well, it all begins today. It's the day we have been anxiously waiting for, yet at the same time, excitedly longing for. It is the day that my Dad begins his bone marrow transplant, the next step towards long-term remission from Multiple Myeloma.

We will be getting to Duke at 8:00 am this morning for Dad's procedure that begins at 8:30. They will remove his port-a-cath and then install a Hickman cathetar. Following the procedure, they will administer his first day of high-dose chemotherapy. He will remain in the hospital overnight, and will hopefully be able to come home tomorrow afternoon. (To see the calendar of transplant-related events for the next few weeks, click here.)

However, since his immunity will be compromised beginning today, the kids are not able to come to the hospital with us (or see him in the next few weeks). We will be doing alot of talking on the phone and Skyping with Grandpa, but they wanted to send him a little message this morning:

Dad, we love you so much and are so proud of how well you've done so far! Praying for you today. May God grant you strength, peace, and perseverance!

"I can do all things through Christ who gives me strength."
(Phil 4:13)
~
"Rejoice in the Lord always...Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God, and the peace of God, which transcends all understanding, will guard you heart and your minds in Christ Jesus."
(Phil 4:4, 6-7)
~
"Consider it pure joy, my brothers, whenever you face trails of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything."
(James 1:2-4)

Encouragement Jar for Dad

For the past couple months our family had been secretly brainstorming what we could give Dad to help encourage him through his bone marrow transplant. We all fell in love with the idea to give him a jar of 60 hand written notes that he could read every day. They are from all of us: Mom, Grandma, Tara, Jamie, Nathan, Natalie, Nick, Kyle and Leah.
We printed our family picture and wrapped it on the inside of the jar to cover 3 of the sides. It worked out perfectly where no one was getting cut in half on a corner! On the last side we wrote a poem to explain the jar to Dad.

Dad started reading his notes this week and has thoroughly enjoyed them!

We love you so much Dad, and hope this will serve as encouragement to you over the next 60 days!

Trust in the Lord with all your Heart

I love Proverbs 3:5-6 - Trust in the Lord with all your heart and lean not on your own understanding; in all your ways, acknowledge Him, and He shall direct your paths. That is what I am trying to do...trust, lean and acknowledge, knowing He will be our guide.

August officially begins our transplant journey as you can see by the calendar below:

I will try to summarize some of the key dates, and ask for specific prayers on Ernie's behalf, being so thankful for your support along the way.

1. Wednesday, August 4 - We have Ernie's "clearance appointment" at Duke to be sure everything is a go to get started on Thursday. Please pray that the lab work is good and he is cleared to move on. Pray for Dr. Gasparetto's wisdom and skill, as she oversees the entire process. Pray also for the other staff members and nurses as they care for Ernie.

2. Thursday, August 5 - We arrive at Duke Radiology by 8:00am to have Ernie's port removed and have a Hickman catheter placed. He is admitted to the hospital for his first high dose chemo and will stay overnight to be monitored. I cannot stay with him, so will be staying across the street at a hotel for the night. Please pray he will have no adverse complications and that the side effects are manageable.

3. Friday, August 6 - If all is well with lab work and evaluation, he will be discharged in the afternoon to head home. At this point he will be restricted from grandkids...this will be very hard, but we can't risk him getting sick and delaying the process as everything is set up at time intervals for the entire month. He will be on anti-nausea drugs round the clock. Please pray that his nausea will be minimal, his mobility remains strong, and that he doesn't catch a cold or anything during this time. Also, he will begin to lose his hair, and who knows the emotions we will be dealing with finding patches of hair in the shower and bed. God's grace is sufficient.

4. Monday, August 9-Monday, August 16 - I will be administering injections (yikes!) at home to stimulate stem cell production, and transporting Ernie back and forth to the Cancer Center across from Rex for lab checks. Please pray for his strength during this time so that we can maintain this schedule.

5. Monday, August 16 - Wednesday, August 18 - If white blood cell count (WBC) is greater than 3000, we will head to Duke as outpatients to begin harvesting his stem cells (aphresis). This process takes about 6 hours a day and we are scheduled for three days, or as long as it takes to harvest 8 million healthy cells (this is actually enough for 2 transplants, so they are thinking ahead and saving us steps should Ernie need a second transplant down the road). Please pray his WBC will be high enough to begin this process, and that they will harvest enough good cells in less than 3 days. I know God is able!

6. Wednesday, August 25 - Return to Duke for labs, chest x-ray, EKG. Move into apartment if all is well. Please pray for this transition and that all is clear to move forward.

7. Thursday, August 26 - Day of transplant minus one (DOT-1) - Drive to transplant clinic for second high dose chemotherapy. This is the BIG GUN! This drug kills both good and bad cells in preparation for the stem cell infusion, basically letting your body start over producing healthy blood cells, but putting Ernie's immunity at zero. Mouth sores are expected as well as nausea and vomiting. However, he will not be in the hospital and I will be caring for him at the apartment. This is a huge prayer request...that with God's strength, I am able, and that he does not for any reason run a fever which would mean infection or hospitalization, and that we can manage the side effects.

8. Friday, August 27 - Day of Transplant (DOT 0) - Return to clinic for stem cell infusion. This is not difficult...just basically a blood transfusion of "liquid gold" - HEALTHY CELLS! Pray this process goes smoothly.

9. Saturday, August 28 - Day of Transplant plus one (DOT +1) - Return to clinic every day from apartment for 2-3 weeks to receive supportive care such as transfusions of blood, electrolytes and whatever else he might need. Please pray he is strong enough to remain at the apartment and walk into the clinic every day. Pray I stay healthy and can keep up with his round the clock schedule of medications, special diet, food precautions, and temperature taking. Pray he does not run a fever, and will keep somewhat of an appetite.

10. Mid September - Hopefully we will be able to move back home and continue his recuperation from there!

As you can see, this will be quite the grueling process, but well worth it when we consider the hope it offers for long term remission and health for Ernie. We are leaning on the Lord and the body of Christ to be able to endure what lies ahead. I know we are not to be anxious, but in our humanity, it is a struggle for sure. We will be taking our Standing in the Gap banner, which many of you have signed for us, as well as Ernie's jar of notes from the family, to the apartment. These will serve as reminders of those who are walking with us, standing in the gap, lifting us up. Thank you more than words can say, and may we be good and faithful witnesses for Christ.

For now, I cling to John 14:27 - Peace I leave with you, My peace I give to you; not as the world gives do I give to you. Let not your heart be troubled, neither let it be afraid.

Ready, Set, Go!

This week is the start of my Stem Cell Transplant program at Duke. The final approval appointment is Wednesday and then on Thursday I check into Duke Hospital. There they will perform a surgical procedure to remove my port, install a Hickman Catheter, and I will then receive the first of two major chemo infusions.

The other day someone asked if I was ready for the Stem Cell Transplant process. Having never gone through such an intensive procedure, I am hardly the expert to ask! However, the Lord has provided Linda and I with outstanding doctors and they believe I am ready.

The scripture shows us how God prepares his children for challenges. In the book of Job, He shows us a man who is blessed with all the earthly trimmings; however the bible describes him simply as a man who fears God. The Lord had prepared Job with the right relationship with Himself, that even when Satan attacked, Job did not blame God or lose faith. What has always impressed me about Job’s story is that God brought Job to Satan's attention. The Lord had prepared Job and knew he was ready for anything that Satan could muster.

I believe it is the same way with me. God has been preparing me for many years to handle every aspect of this cancer. From the first diagnosis, to a long hospital stay, to the ongoing pain, to an invasive Stem Cell Transplant. He has me ready.

In my case He has provided me with otherwise good health, a relatively young age (Myeloma patients usually are in their 60's-70's before being diagnosed), early diagnosis before significant widespread bone damage or fracture had occurred, a wonderfully supportive family and body of believers, His Word, a home, insurance coverage, a loving and talented wife/caregiver, etc. The list goes on and on. He also has been with us every step of the way, aligning events as only He could.

He has prepared me for this challenge and as such I am looking forward to it. Yes, I would prefer not to have cancer, but since I do, I know that the Lord has prepared me for it and is walking with me through it…I’M READY. I look forward to long term remission, free from chemo and cancer, and this is the path to get there.

Last night one of my barbers (Nick) pulled out the clippers and we put a #1 blade guard on.

Sorry….I probably should have warned you…I had Nick cut it really short. I will be losing my hair and wanted to prepare my grand kids to recognize me with no locks…..They are great medicine for me and I did not want them to be uncomfortable with how I might look.

Am I ready? Yes! Let’s get going! I believe the Lord has me prepared.

Thank you to all the wonderful prayer warriors that have been lifting Linda and I up in preparation for this procedure. We cannot even begin to express how appreciative we are for each of you. The encouragement that we receive from just knowing you are praying for us is wonderful. Thank You! Thank You! Thank You!

P.S. Linda will post specific prayer requests as Thursday approaches.

Letting Go

Those of you who know Ernie well, know how much he loved his 2004 white Suburban, affectionately known as "The Burb". It was the second one he owned and regardless of the gas it consumed, it just fit his 'handyman' needs and suited our family well when all 6-8 of us wanted to go somewhere in one car. He also loved pulling his white Roadmaster trailer behind it, helping our kids with their many housing moves throughout the college years, using it to haul tools and supplies for projects he worked on in his business, and even transporting luggage for our youth when they headed to camp.

The myeloma and resulting damage to his sacrum made it more and more difficult for Ernie to drive as he found himself in a lot of pain while sitting upright. That, combined with his job loss, caused us to re-evaluate the need for two cars and the trailer. We decided it was time to sell the Burb and the Roadmaster. The hardest part was going to be finding the right "homes" for them...

As always, God was faithful to provide in such amazing ways. Bay Leaf Baptist needed a new trailer for their disaster relief efforts, and Ernie's trailer fit the bill to a tee! What a blessing it will be for years to come, knowing that the Roadmaster is being used for such a worthy cause, helping so many people in their time of need.

Then, we came to find out that our friends from Florida, Ken and Ruth Poirier, were in the market for a new Suburban. We have known each other for at least 25 years and consider them to be some of our closest and best friends. Our kids have grown up together, we love them dearly, and we couldn't be happier that they are now the proud owners of The Burb! An added bonus was a visit from them to pick it up and drive it back home to Florida. It was so good to see them and their daughter, MacKenzie.

We have had to do a lot of "letting go" in the past 7 months...everything from cats to cars. And yet, it causes one to realize even more, what really matters. In our case, we are fighting desperately for Ernie's health and long term remission, and whatever we must do, we will do. Praise God for giving us everything we need for the here and now...His word, each other, a home, a supportive family, great doctors, amazing friends, a car, food, insurance, the body of Christ and so much more! We are truly blessed and pray we will be found to be good and faithful servants.

"In his heart a man plans his course, but the LORD determines his steps."
Proverbs 16:9

Family Time in Boone

On Wednesday, July 21st, Ernie, Nick, Grandma, the dogs and I headed over to Boone for the first time in 7 months. The Dews and Guenthers arrived on Thursday and Friday. What a wonderful way to regenerate and be together before the stem cell transplant in August. We are so very thankful that Ernie felt he could make the trip, even though he must ride fully reclined as a passenger and would rather be driving!

The weather in the mountains was always at least 10 degrees cooler than at home, and the peace and quiet of the cabin was just so relaxing. We were able to bring Ernie's lift chair/recliner and he definitely enjoyed being out of the bedroom and in the family room and kitchen where all the action was! Many thanks to Nick, Jamie and Kyle for loading and unloading the chair.

We shared some wonderful meals, three of which the kids and Grandma ordered as take-out so Ernie could enjoy some of his favorite food in Boone. We spent alot of time at Valle Crucis park walking with the kids, grandkids and dogs, and just soaking in the majesty of the mountains surrounding us.

We watched a few movies, played a few games, swang on the front porch, enjoyed a nice campfire, laughed, and just savored being all together in one amazing place. Ernie and I constantly thank the Lord for our family and could never adequately express our love for each and every one of them. We know that in the tough days ahead, their love and support will see us through and we are so grateful we were able to spend such precious time together. I'll let the pictures say the rest...