Life Lessons from our Neighbor Charlie

Mom sent out an email last week that was really good. I wanted to post it here so that all could read about their wonderful neighbor, Charlie.

"Cancer changes one’s perspective about a lot of things. You live more in the moment, by faith. You appreciate all the little things. You don’t take life for granted. You stop and smell the roses. Your daily routine is anything but routine. You see your loved ones with different eyes. You are far less judgmental and much more sensitive to those around you. You are much less independent and much more dependent. You are humbled.

We have lived in our house for 6 years now, and directly across from our driveway (and mailbox) is a white trailer with red trim. I never met the person who lives there and am embarrassed to say I didn’t even know his name. He had spoken to Ernie a handful of times, but was rarely seen outside. Then, Nick moved back and began to check our mail when Ernie was hospitalized for a month. Almost daily, our neighbor would see Nick, walk outside and ask about Ernie. His name is Charlie and Nick introduced him to me when we got out of the hospital.

Charlie is about our age, disabled, lives by himself, has no car, can't work, and is divorced. Life may have gotten the best of him sometimes, but Charlie saw a need, stepped up to help a neighbor, and has become one of Ernie’s most vocal cheerleaders. Let me explain…

Every Monday our trash gets picked up at the end of our long driveway, and as I said Charlie lives across the street from our driveway. Nick and I would bring our trash down every Sunday night and one Monday I noticed a man, walking with a limp, rolling our trashcan back to the house. Nick looked out the window and said, “That’s Charlie”. Well, Charlie has taken it upon himself to do this, unsolicited, ever since. Our morning newspaper has also started showing up on our front porch and I know it’s because of Charlie. And daily, as Ernie walks laps around our driveway with crutches or his walker, Charlie emerges from his trailer, stands on his little front stoop, and cheers Ernie on, clapping and shouting, “Way to go Mr. Baker!”. Having had open heart surgery and bad hips that make walking painful, Charlie understands.

We could all use a few “Charlies” in our life to open our eyes, clap, and cheer us on when times get tough. We certainly have learned some very valuable life lessons from him and ask forgiveness for not getting to know him in the past. We brought some homemade cookies and a thank you note by the other day and spoke for a while in his driveway. As we were leaving, Ernie and I heard him call out, “Love you!” I wish it hadn’t taken me so long to meet him. For some reason, Nick opened that door because Charlie felt comfortable with him. Says something about Nick. "

“…You shall love your neighbor as yourself.” Romans 13:9b

A Radio Broadcast about Dad

Two of Mom and Dad's dear friends, Butch Graves and Patti O'Reilly, were on a radio show today called Truth Talk Live (1030 AM). They were talking all about Dad and the upcoming fundraiser, Standing in the Gap.

Butch Graves:

Patti O'Reilley:

Truth Talk Live Radio Host:

To read more about Dad and the radio broadcast, click here. Or to listen to the broacast, click here and then find "Government Handout or Christian Charity" on the list of podcats.

Enjoy!

10 Days from Today...

My Mom said recently, "Never in a million years did we ever dream something like this would be held, or needed for us. From what my dear friends and church members (the organizers) have told me, the idea came about when we were in the hospital and so many people who know Ernie felt helpless and wanted to do something. Ideas were thrown around and before they knew it food had been donated, a place was secured, and numerous auction items were pouring in. As we look at the scope of it now, we are completely blown away."

Thank you to everyone who is involved in the planning of this event. We are incredibly humbled and grateful. "Thank you" will never be sufficient for what you have done. We so appreciate your willingness to STAND IN THE GAP with our family during this difficult time.

Cheers for Grandpa!

This past Thursday was an exciting day for our family. My Mom and Dad went to the Duke Adult Bone Marrow Transplant Center for an extensive 5 hour appointment, with Dr. Christina Gasparetto. After meeting with financial counselors, social workers, medical professionals, and other coordinators, my Dad was accepted as a candidate for a bone marrow transplant!!! Praise the Lord! So, we planned a special steak celebratory dinner for Thursday night. There have been so many hard things that have happened to our family over the last 6 months, but there has also been so much to celebrate and rejoice in as well. Praise You, Jesus. Our dinner concluded with a toast of sparkling grape juice, and the kids thought it was so fun to say "Cheers!"

My Mom sent out a letter describing the Bone Marrow Transplant to some of our family and friends, and I wanted to share some points of it with you, so that you can know best how to pray for us over the next 6-8 weeks:

• We were surprised to find out that Duke does only 200 of these transplants a year and has only done 2000 since 1983 when the program began. (I don’t think that is because there aren’t more people that need it. It is because only a select few qualify and can endure it.) It has been described as going to hell and back by many medical personnel, but it offers the best prognosis for long term remission in MM patients.


• Ernie’s overall physical condition will be evaluated in the next 4 weeks to insure he is a candidate for transplant. This includes: lab studies, Echocardiogram, Pulmonary function tests, CTscan, PETscan, MRI, bone survey, bone marrow biopsy and aspirate, and a dental exam. After the results are reviewed he will hopefully be enrolled in a treatment plan.


• A central venous catheter (CVC) will be implanted by a radiologist and that takes about an hour. Even though he has a port, this catheter must be used because more than one line can be attached to infuse multiple medications. A part of the catheter is outside of his body with 1 or more lines and will not be removed for an extended period of time, therefore I must learn how to take care of it, flush it, and change the dressing.

• Ernie’s transplant is called “autologous” meaning they will collect his own stem cells, freeze and store them and then give the cells back to him after 2 days of high dose chemotherapy. The terms “stem cell transplant” and “bone marrow transplant” are used interchangeably. Our insurance company must authorize the transplant before proceeding.
  
• Duke will need to collect 5 million healthy cells to freeze, and that process is called apheresis. That can take from 1-4 days, 6 hours a day. Hopefully he has a lot of healthy cells and it can be done in a day! He can be hooked up to the machine lying down. There will be side effects as with every procedure they will do and we will be prepared as best we can be.
  
• Next comes the preparative regimen…high dose chemo for 1-2 days. (He will loose his hair within 2 weeks of these treatments.) Then he will be given the infusion of stem cells and closely monitored for any side effects. Next we wait for engraftment, which is when your body accepts the transplant and your white blood count returns, usually 3-4 weeks following the infusion.
  
• We will be living in a 2 bedroom, furnished apartment near Duke, as we must be within 10 miles of the hospital should Ernie begin to run a fever any time during this process. I must take his temperature every 4 hours initially. Infection is the number one complication along with, anemia, thrombocytopenia (decrease in platelets for clotting), pulmonary complications, pain management, nausea, vomiting, anorexia, diarrhea, constipation, stomatitis and mucositis (inflammation of cells in digestive tract and mouth), and skin changes. I will be following a strict regimen of medication and monitoring while in the apartment, as well as following every precaution for eliminating germs.
  
• Ernie will be what is called “neutropenic” which basically means he has no immune system. Therefore he can only eat certain foods, prepared in very specific ways, with careful attention to temperature. He can only drink distilled water or water treated by reverse osmosis and we will have to wear masks. I will be given a calendar to keep track of his medication schedule and record on a daily basis, and will be driving him back and forth to Duke every day while in the apartment.
  
• I cannot say how proud I am of Ernie and how he has handled his diagnosis and job loss. Life as he knew it has been turned upside down and he has been the picture of faith, strength and determination. He has been appreciative, positive, faithful, patient and loving. The doctors are amazed at his attitude, knowing so many who are depressed, discouraged, or down and out. He has graciously “let go” of so many of his prized possessions, developing a whole new appreciation for his family and home. He has kept his sense of humor and been kind to all of us. He has swallowed his pride and shared his heart. I love him more today than yesterday and am honored to be by his side on this journey back to health.
  
• As you may realize, this is a serious and huge undertaking for both of us. We covet your prayers during this time that:

1. Ernie will continue to qualify as a candidate
   
2. We will both remain healthy, strong and free from colds leading up to the procedure
   
3. Dr. Kritz and Dr. Gasparetto will be given wisdom as they make decisions
   
4. The side effects will be minimum and tolerable
   
5. He will remain strong enough to get up and walk
   
6. He will not develop pneumonia


7. He will continue to be positive, have hope and faith that he can beat this


8. I will have the stamina, patience, and health to be Ernie’s 24/7 caregiver

PS. Dad also got a new walker this week, and is thrilled that it goes over indoor obstacles (throw rugs, carpets, etc.) and outdoor obstacles (pavement, gravel, grass, etc.) easier than his other one. But I have to say that he was not the only one that was excited about the walker's new capabilities!

As you can see, the walker is equipped with a basket so Dad can now take things with him from place to place. However, when Nathan and Natalie saw the "pouch" it was quickly filled with a baby bed and covers, a yoyo, a baby toy, some "beep beeps" (cars), a mascara kit, a UCF Knight doll, a UNC ball, and a few other items. Dad was a great sport as the three of them transported the items to Nick’s room, where they unloaded and sang some unloading songs. Then they loaded it back up again for the trip down the hallway to Grandpa's and Grandma’s bedroom where they unloaded again, sang some songs and did a few orchestrated spins. Then they loaded again and made their way back to the toy basket for another unloading. To use Dad's words: "It was a complete success by the NAT’s MOVING and SINGING SERVICE."

You are surely loved by us, Dad! Thanks for being such a wonderful father and grandfather. We are so excited that you are a candidate for the Bone Marrow Transplant and will be praying for you ever step of the way! And though your walker is very cool with the new basket and high-tech wheels, we will be ecstatic to see the day when you don't need it anymore! But for now, we are still saying, "Cheers for Grandpa!"

Remission!

Dad had a wonderful appointment with Dr. Kritz on Friday and was told that his numbers show that the myeloma is in REMISSION!!!! Praise the Lord!!! Dr. Kritz was very pleased with Dad's progress through his chemotherapy treatment (phase 1) and is referring Dad to a doctor at Duke for the Bone Marrow Transplant (phase 2). He will be meeting with this doctor soon and we are praying now that they accept Dad into their program and we can begin moving forward with this 2nd phase of treatment.

Dad still is unable to sit or bend due to the sacral pain, but is more mobile while walking. He even is down to just using a walking cane sometimes! Please continue to pray for Dad's strength and mobility, for the pain to decrease in his sacrum and legs, and for his acceptance into the BMT program at Duke. We'll keep you updated, but until we know more, please join our family in celebrating this news of remission!

Praise Report!

Thank you so much for your continued prayers for my Dad! Our family is so incredibly grateful and believe that the progress he has experienced is a direct result of your petitions before the Lord. Thank you!!!

Dad has been home for almost a month (click here for the post about his homecoming) and is doing well. As pictured above, he has quite the set-up! Dad's hospital bed is right in front of the big picture window in their master bedroom so he can enjoy the view. He loves being able to see the trees, as the only view he had in the hospital was of the sky. What a different view green trees are! Plus, the window opens so he can feel the breeze and hear the birds. Two other things we often take for granted, but he's been enjoying since he's been home.

Dad is able to get in and out of the bed by himself too! It is still very painful to sit, but Dad has found a way to get from laying to standing without much pain. He uses the walker or crutches to walk, and tries to walk and do his exercises every 2-3 hours during the day. He also comes out and enjoys every meal with us, though he still has to stand to eat. (However, this is yet another huge step as he's not having to eat in bed anymore!) Some more praises that Dad has experienced over the last month include being able to take a shower (no more sponge baths!!!) and being able to ride in the car to and from chemo (and not have to be transported on a stretcher).

Please continue to pray for:

• Dad's strength as he rebuilds and strengthens his leg muscles.


• Continued healing and rebuilding of his sacrum.


• Continued diminishment of the overall cancer in his body and the tumor in his sacrum.


• Dad's ability to sit.


• That his disability application would be approved. (We should find out within the next month.)

Thank you again for your prayers! Have a wonderful weekend!!!

Prayers are Answered!

Though we enjoyed visiting Grandpa in the hospital...

...we sure are glad to have him HOME!

Our family has truly experienced the power of prayer! It was just last Thursday that we posted these prayer requests, and in one week Dad has accomplished more than we could've hoped for:

• He completed 10 sessions of additional radiation on the tumor in his sacrum. This has helped ease his pain tremendoulsy in his sacrum and legs!
• Last Friday, he stood with the help of a machine that is normally used to get people out of wheelchairs. (We are so thankful for Mike and that he brainstormed Dad's case on his time off, thinking outside the box!) Fortunately, there was no pain in Dad's legs when he stood and they were strong enough to support him!
• On Monday, Mike brought the same machine and used it to help Dad get up and walking!

And by Wednesday, Mike had Dad getting up from the bed, walking, and then laying back down all by himself with just a walker!
So yesterday, they discharged Dad from the hospital after 31 days! Hallelujah!

Dad will have a Physical Therapist come to the house 3 days a week, but in between those visits he has exercises to do himself. And yesterday I just watched in amazement as he walked down the hallway every hour and then came and stood near the dinner table for supper! There's truly no place like home!

So, from our entire family, we thank you for your prayers. We are experiencing the power of prayer and are humbled beyond words!

Covered in Love!

He's standing!

Thank you for all your prayers for our family!!!! Your sweet comments, facebook posts, and emails have meant more than you will ever know for our family. And I can tell you: THE PRAYERS ARE WORKING! Dad worked with Physical Therapy today and was able to stand up for the first time in 27 days! This special machine helped him get through the sitting position and vertical without too much pressure on Dad's sacrum. And Dad said there was absolutely no pain once he was vertical and he was able to put pressure on both his legs and support himself (hence the "See, no hands!" picture above). Please keep praying to our Great Physician for healing and restoration of mobility! We praise Him for this wonderful milestone today!

Diagnosis & Update

As many of you know, much has happened in our family since the beginning of 2010. After having considerable back pain last fall and consulting with numerous orthopedic doctors, my Dad went for an MRI on January 4. From that diagnostic test, it was determined that my Dad had "abnormal cells" near his tailbone and underwent a needle biopsy (click here for that post) to find out specifically what they were. The abnormal cells were diagnosed as a plasmacytoma (click here for that post), a collection of rapidly dividing plasma cells that attacked his sacrum. For all of us who are not up on our anatomy, here is a picture of what a normal sacrum (the blue area) looks like:

By the time we discovered the mass in my Dad's sacrum, it had probably been there for at least a year. It was only when the intense back and leg pain began occuring that we realized this mass was present and it had already done considerable damage to his sacrum bone (with some doctors estimating the damage up to 50%). The sacrum is the "root hub" for the nerves of the lower half of your body. (There are 4 holes on either side of the sacrum where all the nerves for your legs run through.) It has also been described as the "cornerstone" for your spine and pelvis.

Dad went through several other medical tests (x-rays, urine tests, and blood screenings) at the end of January to determine if this sacral plasmacytoma was the only location of cancer in his body. (Since this is a blood cancer, it is very rare that it only occurs in one spot.) Following these tests, it was determined that there were also "lesions" on his skull, left femur, and humeri (upper arm bones), and he was diagnosed with Multiple Myeloma.

A sweet church member had recommended her oncologist to Mom and Dad before we ever found out it was cancer. And it was only through God's provision that we were paired up with him immediately! He is a nationally-renowned oncologist by the name of Dr. Alan Kritz. He specializes in blood cancers and we couldn't be more grateful that he is right here in Raleigh:

Dr. Kritz began treatment immediately. Dad underwent 12 radiation treatments over the course of 3 week time period to begin shrinking the tumor in his sacrum. In addition, he had a portacath put in and began chemotherapy (which will last a total of 4-6 months). Dr. Kritz's "chemo concoction" consists of 3 chemicals which have just recently made great advances in multiple myeloma treatment: Velcade, Thalidomide, and Decadron (steroid). He also gets Aredia (bone strengthener) once a month. Besides being tired and slightly nauseas, Dad has not had any serious adverse reactions to the radiation or chemo- Praise the Lord!

During the month of February, Dad was tired but felt great! The pain was lessening, his blood counts were looking good, and Dr. Kritz was thrilled with his progress. I am so thankful that Dad felt so good during the birth of Samuel and Samantha, and was able to come visit me at the hospital everyday.

On March 6, Dad took a misstep going to church. He felt a sharp pain and within an hour was unable to bear weight on his left leg. He began using crutches, but over the course of the next 2 1/2 weeks, Dad had more and more pain as he tried to sit or walk.

On March 29, we made the decision to transport Dad to Rex, where doctors could come to him and treat his pain. By this point, it was absolutely excruciating for him to sit or stand. He met with a neurosurgeon, a neurologist, and a doctor from the pain clinic. They tried putting in a "pain pump," which administered pain medicine directly to Dad's sacrum, but unfortunately, it did not provide any more relief than oral medications. In addition, they have done CT scans, more MRI's and x-rays of his sacrum. The tumor has shrunk (praise the Lord!), but as it decreases, it leaves a void in the sacral bone. Therefore his sacrum is "unstable" and the weight of his upper body is not supported when he tries to sit or stand, pinching the nerves to his legs and causing incredible pain.

It has now been 3 1/2 weeks, and my Dad is still in the hospital. When he is laying down, there is absolutely no pain. However, when he "bends" to sit, it is unbearable due to the pain. Dr. Kritz has started him on 2 more weeks of radiation and Dad is continuing with his chemo while in the hospital. Last week, we did receive some good news: the overall myeloma in his body is greatly decreased...up to 90% gone! (Dad's M-spike was a 2.4 in January, and now it is a 0!) Though this "mechanical problem" of pain in his sacrum is frustrating, we are so grateful that the overall cancer is really responding and is greatly diminished!

Please pray specifically for these things:

1. For Dr. Kritz' wisdom in treating my Dad.
2. That the radiation and chemo will fully eradicate the remainder of the tumor in his sacrum, any other "lesions" that he might still have on his bones, as well as the abnormal plasma cells in his blood.
3. That the pain in my Dad's back and legs will decrease so that he can sit and stand.
4. That my Dad will gain mobility and be able to come home.
5. That while he is in the hospital, he will not experience any sickness or complications from laying in bed.
6. That he will be a candidate for a bone marrow transplant (using his own marrow) at the end of his chemotherapy treatment. (Bone marrow transplants for multiple myeloma patients have proven to have the most long-term lasting effects.)
7. For strength and grace for my Mom, and the rest of our family, as we walk with my Dad through this journey.

On top of this medical trial, my Dad was terminated from his job just 2 days after finding out the results of the MRI. Our family has had to make some incredibly hard decisions since then, but have determined that it is best for my Mom and Dad to sell their home and move in with my Grandma. (I will miss having my Mom and Dad as my next door neighbors, but my Grandma only lives 5 minutes away and has a mortgage-free home with room for everyone!) Please pray for these financial requests as well:

1. That the company that terminated my Dad would offer him a severance/settlement package of some sort. (At this point, they have given my Dad nothing- no pay, no health insurance, etc. We are grateful for unemployment and Cobra though!)
2. That my Dad's application for disability will be approved.
3. That my Mom and Dad's house will sell quickly- We are hoping to have it ready to go on the market by mid-May.
4. For continued strength, peace, and comfort for my parents.
   

It is in these trials of life that you realize just how little the materialistic things matter. We are so grateful for our family, and this journey has further strengthened our bond and draw us closer together. And it is by faith that we cling to Christ, as He is more important to us than everything else.

I'll leave you with one final verse that has given us great encouragement: “Therefore humble yourselves under the mighty hand of God, that He may exalt you in due time, casting all your care upon Him, for He cares for you. Be sober, be vigilant; because your adversary the devil walks about like a roaring lion, seeking whom he may devour. Resist him, steadfast in the faith, knowing that the same sufferings are experienced by your brotherhood in the world. But may the God of all grace, who called us to His eternal glory by Christ Jesus, after you have suffered a while, perfect, establish, strengthen, and settle you. To Him be the glory and the dominion forever and ever.” (1 Peter 5:6-11)