Home Away From Home

On Monday evening we moved into our home away from home for 2-3 weeks, a furnished apartment in Durham. We were pleasantly surprised to find it large (2 bedroom, 2 bath), well furnished, clean, and convenient. We feel blessed to be staying here, rather than in the hospital, and are so thankful insurance covers it as part of the transplant process. It was definitely a role reversal for Nick to be moving us in and then heading home...we all agreed it felt weird for sure! Anyone curious to see what it looks like? Well, let the tour begin...

We are on the first floor corner, bottom right in this picture. There is alot of shrubbery and everything is really well kept.

We were surprised by the two dead bolts...welcome to Durham!

We have a nice screened porch...furniture is an additional charge though, so no sitting outside for us.

Nice master bedroom with 'Dream Bedding'...white soft sheets and duvet with down alternative blanket.

Of course we brought our SITG signed banner and hung it right in the living room...we love it and find it so encouraging!

We also brought a ribbon so we could hang each of the hearts Ernie reads from the encouragement jar. They hang right on our bedroom window so he can look at them often.

Our kitchen has all the conveniences and we were surprised to find that the utensils, pots, pans, coffee maker, and blender all appeared to be brand new! The washer and dryer are in the room right off the kitchen.

This is how we eat...Ernie standing and me sitting.

Of course we needed wall art and Nathan and Natalie provided that for us!

We think this apartment will do just fine as our home away from home, but of course there is no place like our real home and we sure will be thankful to get back to Wake Forest, our family, friends, and doggies!

Hair Today, Gone Tomorrow

I had several options for the title of this post: "Hair today, gone tomorrow".....or "Look ma, no hair!".....or how about "Patches McGuff". Well, you know the one I picked. Most of you would recognize me looking something like this:

I lost the mustache a while back, and Nick and Jamie have been cutting it shorter and shorter, but thanks to the chemo treatment, my hair has begun departing for a better place I guess.

Sunday we did not see much hair loss, but come this morning, well, the pictures tell the story:

At this rate, by Friday I won't have to invest in shampoo! Tonight we will go with no guard on the clippers to shave off as much as we can so it won't look quite so patchy. To lose one's hair temporarily to destroy the myeloma is an easy choice.

Thank you all so much for the love, concern and prayers. We love you!

A Girl who LOVES her Grandpa

What a wonderful time we all had this weekend just being together! But I can assure you that there was one little girl who loved her time with Grandpa more than anyone else. After not being able to see Grandpa for almost 3 weeks, Natalie was counting down the minutes until we were going to Grandma and Grandpa's house. She changed into clean clothes, she scrubbed her hands, and though she was reluctant, she wore the hospital mask...all so that she could snuggle with Grandpa (and do one of her favorite things: play on his iPhone!):

When it was time for dinner, she said, "I don't want to eat. I'd rather stay here with Grandpa." And it wasn't until I assured her that Grandpa was getting up to eat too, that she came to the table. We all sat down and Grandpa came over to complete our circle, as we held hands to pray. As soon as he grabbed her hand to pray, Natalie looked up at him and said, "I love you Grandpa." It was the most innocent, unsolicited, genuine statement of affection. And it left not a dry eye around that table!

There are many things that Natalie loves, but one thing is for sure: She is a little girl who absolutely loves and adores her Grandpa!

Send Off Dinner With Family

It was so good to gather as a family once again, after a few weeks of isolation in preparation for the stem cell harvest. Now it was time to say goodbye for a few more weeks while we move to Durham, have the transplant, and wait for Ernie's blood to basically start from scratch and rebuild. Leah and Kyle came in town to meet their new nephew (on the Guenther side) and joined us for our special dinner Saturday night. Grandma joined in the fun as well.

Ernie was so excited to be able to spend time with the family and see our grandchildren again! (Mask came off only to eat)

Masks were definately the order of the night, and even the Nats got in on the fun!

After a delicious steak dinner we enjoyed our new favorite dessert...Pioneer Woman's Apple Dumplings (add a scoop of vanilla ice cream while serving)!

What a wonderful time we had! We look so forward to getting through the transplant process so that we can enjoy many, many more family dinners together!

Biding Time in Durham

These are some of the foods Ernie will hopefully be enjoying in Durham. He loves anything cold, so popsicles always hit the spot. And then there are Cheetos...for some reason they are something he is really craving right now. Hard candy helps with dry mouth, and of course, who wouldn't love Dove chocolate!

'Words with Friends' is something we both love to play...basically it's Scrabble on our phones. We sit for hours playing one another, along with other family members and friends. It really helps to pass the time while waiting...which we do alot of lately!

Laptop, webcam, Encouragement Jar, 2 books that Nick thinks he would enjoy. Ernie will spend hours working in his laptop, writing and answering emails, and checking the kids' blogs. He loves picking a new note out of his jar each morning and his heart truly is encouraged by every one of them. And books...well we'll see. He doesn't do much reading apart from things on his computer, but Nick hopes he'll start.

Time for tea! That's what I hope for...less coffee and more tea. Just brings me to a place of relaxation and my favorite color is red, so I love my cup and teapot.

Thank you notes. I love handwritten notes and there are so many people I want to thank for Standing in the Gap. Unfortunately I don't have a record of all who purchased raffle and dinner tickets, but for those who donated that I do know about, hopefully you will receive a thank you note.

Watermelon. This just tastes really good to Ernie right now, so we will be sure to have plenty of it on hand!

My Transplant Handbook (never leave home without it), Bible (my daily bread and source of strength), Journal (so much happening that I want to record), 2 new books (not a reader but am going to try), and yes...Weight Watchers point counter, food tracker and motivational reading (sadly I seem to be finding all the weight Ernie is losing).

Yarn and knitting needles. My Mom taught me to knit last night and I have started a "Prayer Shawl". This is a ministry where the knitter prays for the breast cancer patient who will be receiving her shawl. I have always wanted to learn to knit and thought it would be a great distraction while sitting and watching Ernie sleep during treatment.

Nick got us a subscription to Netflix, so we all have enjoyed a number of movies already... right from the comfort of our own bed!

Of course there will be lots of traveling back and forth from apartment to clinic, lots of lab studies and different medications and infusions, and hopefully lots of rest and sleeping for Ernie. We'll see what else we can find to do, but for now these are the things we'll be sure to bring along!

Thank you again for your prayers on this journey. Eight months ago this was our goal...get to transplant! We can hardly believe the actual day of transplant is almost here and we are so very grateful.

Moving to Durham Monday!

Just a quick post to let everyone know our calendar has been moved up by 3 days! They got all 8 million healthy cells in just one day of aphresis! Ernie did need one unit of blood and some lasix to help get rid of all the fluid they gave him, but otherwise he handled the process with no problem. I corrected the dates on the sidebar so that it accurately reflects the schedule for next week. We will head to another "clearance appointment" on Monday where they will do an EKG, take another chest x-ray and do blood work to be sure everything looks good to go. If the "all clear" is given, we will move in to our assigned apartment sometime after 3:30! By the pictures and virtual tour, the complex looks very nice and is located right off 15-501. It is a 2 bedroom on the first floor and will be our home for 2-3 weeks.

Ernie will be on a strict regimen of following food safety guidelines for a neutropenic diet, which is for people with weakened immune systems as evidenced by low white blood cell counts. It helps reduce the risk of food-borne illness caused by bacteria. Take out food and/or dining out is a no no for now...so are fresh flowers and visitors :(.

Tuesday morning we head back to the Transplant Clinic for Ernie's 2nd high dose chemo, Melphalan. This is what they call the BIG GUN...strong stuff that will take all Ernie's numbers down to zero in preparation for infusing his healthy stem cells on Wednesday morning. The actual infusion takes about 20 minutes and can cause serious mouth and throat sores. One thing that can help reduce or prevent this is keeping ice in your mouth, which thrills Ernie...he loves to chew on ice!

As you can imagine, there are a number of things we would ask you to pray for Ernie:

1. That he will not develop mouth or throat sores.
2. That the medication would once again control any nausea so he would not get sick to his stomach.
3. That he will remain strong and mobile enough for me to transport him back and forth to the clinic every day.
4. That he would not develop any infection or fever.
5. That his blood would rebuild itself quickly (engraftment) and for his overall protection from any complications.
6. That we would remain faithful, positive and full of hope for the future...witnesses to God's healing power.

Jeremiah 29:11 - For I know the plans I have for you, declares the LORD, plans to prosper you and not to harm you, plans to give you hope and a future.

Tomorrow I will post some pictures of how we plan to entertain ourselves for 3 weeks...stay tuned!

The Power of Prayer...from 1600 to 8200 WBC!!

Today began with another trip to the Transplant Clinic for labs to see if Ernie could begin the aphresis process. God demonstrated His faithfulness once again in answering the prayers of so many, as Ernie's white blood cell count increased dramatically from 1600 yesterday to 8200 today! We didn't realize he also needed enough stem cells to begin the harvest and once that count came in (82 million), not only was it high enough, but they believe they can capture the necessary 10% (8 million) of those healthy stem cells in just this one day! Ernie didn't feel a thing as this amazing machine filtered, warmed and re-circulated his blood. He napped, worked on his laptop, ate, went to the restroom and played Words with Friends on his iphone.

What a day of celebration this is for us as we look back on all the steps it took to get us here...23 chemotherapy treatments, 22 radiation treatments, 8 months of doctor's visits, 31 days hospitalized at Rex, 26 days unable to get out of bed, 5 months of walking with crutches or a walker, surgery to have a port put in, surgery to have the port taken out and a Hickman catheter put in, echo-cardiogram, EKG, chest x-rays, 3 bone marrow biopsies, a failed intrathecal pain pump, 2 great physical therapists, brilliant oncologists, long bone x-rays, MRIs, CTscans, and Neupogen injections. But most of all, we are here because of the power of your prayers and a mighty God who loves us and has a perfect plan for us, all in His perfect timing! Here is Ernie with his stem cell harvest after 6 hours of aphresis.

Thank you for walking with Big EZ on this roller coaster journey through multiple myeloma. We will return to the clinic tomorrow (Wednesday) for lab checks to see if Ernie needs anything (platelets, potassium, calcium, etc.). We will then monitor things at home until next week when we move into the apartment in Durham and get ready for the 2nd round of high dose chemotherapy. After that, the healthy stem cells are re-infused to start from scratch in making all new, healthy blood cells of every type. Amazing!

Not high enough yet...

Thank you so much for the prayers this morning as we headed to Duke. As you can see by the picture, Ernie was ready to get started with this! Unfortunately his white blood cell count was only 1600, so they could not begin the harvesting process yet. While disappointed, we are home and grateful that we live closeby and aren't camped out in a hotel somewhere while we wait. We will pray that his numbers will double tonight...GOD IS ABLE!

The nurses said this is all perfectly normal as it takes 10-12 days after high dose chemo for the body to rebound, and it has only been 10 days. I was happy they were able to change his dressing this morning, take a look at the catheter, and draw some labs so we know where he stands. We also met a nice couple (he is a hospice pastor) beginning aphresis like us, and we will both be part of the same "graduating class" as they call it. So, keep the prayers coming and hopefully we will have better results tomorrow!

The Crew at CCNC

Back in January, just one day after learning Ernie had a form of blood cancer, we found ourselves at the Cancer Centers of North Carolina for 2 1/2 hours. We were greeted by a caring staff and a wise oncologist who took action immediately to more clearly define the extent of the cancer. And now, 8 months later, we say a temporary farewell to these fine people as we head to the Transplant Clinic at Duke for Ernie's care in these next few months. Of course, what's a celebration in the Baker household without Monkey Bread! Here are some of the infusion nurses that we have come to know and love:

Dr. Kritz even enjoyed a bite or two!

Many, many thanks to these special people, called to work with cancer patients. We can honestly say we looked forward to seeing them each week!

Shots, Medication and Stem Cell Harvest

Last Monday I began giving Ernie 3 Neupogen shots in his abdomen every morning to stimulate stem cell production in preparation for harvest. Stem cells are the immature cells in your blood and bone marrow that grow to make white blood cells, red blood cells and platelets. I never dreamed in a million years I'd be doing anything even remotely close to this, but somehow you find yourself just doing what needs to be done. Thank goodness he has a high threshold of pain and is a very patient patient! Anyway, what continues to amaze me about cancer, is the cost of all the medication. As you can see by the picture below, these 30 shots cost $9,631.48...yes, you read that correctly! All I can say is, thank you Lord for insurance and co-pays that we can afford.

Giving these 3 shots costs about $963 a day!

Gloves, masks, dressing changes and other medications are also part of the daily routine. We mark the tops of the bottles and use an AM/PM pill organizer, as well as a daily medication chart to help keep track of things. Without the help of these aids, it would all begin to run together and neither of us would remember who took what when...especially in the middle of the night!

On Monday the 16th we will head to Duke by 8:00am for lab work to check blood counts, chemistries, and stem cells. If Ernie's white blood count (WBC) is greater than 3000, the stem cell harvest process (aphresis) will begin. IV tubes will be attached to Ernie's central catheter line for six hours and blood will run through the machine you see pictured here. It miraculously spins and separates the blood so the stem cells can be collected into a bag that hangs above the machine, and frozen until the time of infusion. His blood is warmed to body temperature and returned to him continually. He will be laying down during this process and it isn't painful like it used to be when cells had to be taken directly from the marrow. Whoever invented this machine was one smart dude!

Stem cell transplant is the process we have been praying for since the day Ernie was diagnosed, as it leads to greater remission levels and a much more positive long term prognosis. We can hardly believe we are actually in the middle of it some 8 months later and we praise the Lord for the answered prayers that lead us here! We covet your prayers in this next week, that:

1. Ernie's lab work will show he is ready to begin the process.
2. They will be able to harvest 8 million healthy cells in 2 days rather than 3.
3. Ernie will be able to be comfortable in the bed for 6 hours at a time.
4. Ernie's temperature would not rise above 100.5 during this process, indicating infection.

Once again, thank you for walking with us through our blog. Your words of encouragement and knowing you are praying for us, certainly help to carry us through the difficult days.

Commit your way to the LORD, trust also in Him, and He shall bring it to pass. Psalm 37:5