What "he" said about "her"

"My wife is the best wife anyone could ever have. She is my lawyer, my doctor, my indian chief. She protects me from people hurting me. She is very protective. She is the best wife anyone could ever have. She told me "I didn't leave you when I was 14 and I'm not leaving your side now". I love her so much for what she is doing for me. I love her even more for it. "

Today is...

Today is actually Tuesday but I know I won't get around to posting this until later this week....


Kailynn-James and I are sitting in the truck waiting for my Dad @ his second appointment of the day. The first was with his Spine Dr. and this one is with his primary care physician because he is starting to catch a cold.....

As we sit here and wait, it's raining and Kailynn-James is causing all kinds of ruckus... still I can't help but type this out now, rather than later. If I wait until later, I'm thinking I may go back and edit or take out a few things that I think perhaps I shouldn't be saying......

But THIS is HARD......... SO HARD.... While @ my Dad's appointment with his spine dr., the dr. showed us the cat-scan and explained what everything was... He showed us photos of my dads bones and what the "C" word has done to his bones.... I think it was the worst thing I've ever seen :-( :-( It hurt so bad to hear someone explain what this DISGUSTING disease has done while trying to terrorize my dads bones. I hated every second of it... every moment made my stomach hurt anymore.... and as a tear rolled down my cheek all my dad did was SMILE at me... The sort of smile to tell me not to cry that GOD is taking care of it all. The damage to his bones is not something new and of course I knew there was damage... but to see it in 3D was a bit tough to me....

Now, please don't think I'm saying I am discouraged or not believing that my Dad is being healed because that is not the case... You see, if you could have seen what I saw, you would wonder HOW ON GOD'S GREEN EARTH is this man even getting up and WALKING... How is he SMILING.... How is he even lifting his legs, moving, etc.

It's all through GOD! Today further strengthened my faith and weakened my sight.... Although I find myself crying, it's only because of the pain my Dad has to endure.... But soon, very soon I'll crying tears of JOY when we get the result that there is NO TRACE of this malicious disease.

Through it all, he smiles

no words... just photos...

SMILE MORE today

PrOgReSs 2

On Monday, my Dad had a cat-scan appointment. We used call a bus again and this time we went out the front door. It was SUCH a beautiful day!! 

 Kardan, Kailynn-James & Daddy waiting for the bus

 Daddy waiting for the bus

 Mommy pushing daddy to the bus

Kailynn-James "fake" crying when they left

We are PRAYING that the results from the cat-scan come back to show that every cancerous cell has been removed from my dads body! 

After they came back, my Dad wanted to take a ride in the truck. This was the first time in MONTHS that we even thought about trying to get Daddy in the truck. Since all of the surgeries, pain, etc. as you know, he's been being transported via stretcher, then wheelchair. I was SO HAPPY that we tried because it worked! We got him into the truck and took off! 

we took a ride to a horse farm 5 miles from home.

deer resting @ the farm

the beautiful horses

I've started to realize that my love for nature comes DIRECTLY from my dad. Him and I have such a love for outdoors, nature, wild life, etc. :)

Kardan helping to bring Daddy back into the house.

PS HAPPY THANKSGIVING!!!!!

They Called!!!!

Guess who called???


A Representative from Johnson & Johnson!

Yesterday, while I was driving back from my fathers dr's appointments I received a call from a telephone number from a 908 area code. I couldn't answer because I was driving and well, it's illegal to drive and talk on a cell phone in Maryland. My parents phone rang less than a minute later. I asked "is that a 908 number?" and my mom said "yes" and then answered.  "Hello?" she said........ "Hold on, let me put you on the phone with my daughter" I immediately KNEW it was Johnson & Johnson!!! "It's Johnson & Johnson" Mommy said. My eyes lit up and I got a little nervous that I wouldn't know what to say! " Hello?" I said "Hi, this is Kelly McLaughlin (or McGlocklin) from Johnson & Johnson, I received a letter from a friend of yours regarding your father" she said. "Ok, Hi!!" I said (not knowing what to say). "I took a moment to read your blog and I see that you have a letter campaign going on" She said (I smiled). She ventured to tell me that she read the blog and thinks we have a wonderful family and wants to send me information regarding Abiraterone... I immediately feel discouraged that I would just be sent the information that we ALREADY KNOW so I added "I called in a week ago and asked how to get this medicine for my dad and was sent to a clinical trials website... but the trials weren't currently enrolling and this is something we need now..." She says "Oh, ok, did they tell you about getting early access?" "NO!!" I say with excitement "ok, well I am going to have early enrollment information sent to you via fed ex. You will need your fathers oncologist to get in touch and see if we can enroll him in the early access program. He will need to fit the criteria but often times the drug can be released to patients who need it immediately who can benefit from it." WOW! It's so crazy that I never had any idea that drugs can be released to patients in IMMEDIATE need. Did you? I think these are the types of things and information Mecia would like to put out to the public with her Non Profit that she is working hard to start.

Before we ended our conversation, I asked her whose letter did she receive... She explained that she'd only received one letter and it was from Jessica Ward. 

Below is the letter sent by one of my closest friends, Jessica Ward. Her letter is absolutely BEAUTIFUL!!! Jessica has been in our lives since I was 16 years old (I am now 31) and has been able to see first hand how wonderful of a man that my father truly is!

Please see the letter below:

Attention: Pharmaceuticals Department Johnson & Johnson                       Friday November 19^th, 2010

Happy Holidays!

I am praying that this letter has reached the ONE person that can make my request a reality!

It has come to my attention that your company, Johnson & Johnson, has made an Amazing drug called Abiraterone, and that through current clinical trials has proven to prolong the life of Stage 4 Metastatic Prostate Cancer patients.

The purpose of my letter is to request that you consider adding someone to your clinical trials. This person has become through the years an AMAZING role model in my life. His name is James Muckelvene, husband of 35 yrs to Pearline Muckelvene, father to 3 BEAUTIFUL women, and grandfather to 8 AMAZING grandchildren.

I have had the wonderful opportunity of being close friends with the youngest of his three daughters, and through the last 16 years I have experienced an amazing display of Selflessness, Love, Loyalty, Courage and FAITH that people only DREAM of seeing. At any moment in James’ life if anyone in his family ever needed ANYTHING there was never a moment of hesitation, if it was his, it was Yours! SELFLESS, he and his wife!

This amazing couple set a foundation with their love and most importantly their FAITH IN GOD that has become UNBREAKABLE and now in THEIR time of need the structure that they built is keeping them safe and full of HOPE!

In February of this year James received the unfortunate news that he had Stage 4 Metastatic Prostate Cancer, soon after to find out as well that the ravenous disease had affected the integrity of his bones. By the recommendation of his oncologist, James went through several surgeries in a matter of a couple of months to repair damage to his spine as well as replace and correct both hip bones. After his last surgery the doctors sent him to hospice with the mere prescription of “make him comfortable.”

The Muckelvene family would not have this! And quickly the ball went rolling; everyone pitched in to provide the same SELFLESS love and support that the couple had shown to them all those years ago. It has been an AMAZING experience!

I encourage you to take a moment and see for yourself the journey James and his family has been making, the family has been keeping a blog of it at::www.4wewalkbyfaith.blogspot.com .

I beseech you now to provide a miracle to this journey of FAITH that has amassed such an extraordinary following and has inspired so much generosity and LOVE!

Please, please consider James Muckelvene to participate in your clinical trials of ABIRATERONE. He fits the criteria, and time is of the essence, with just a simple entry you will make such an amazing story EXTRAORDINARY! God has BLESSED YOU with the knowledge to discover this amazing drug, and we ask that you pass along the BLESSING of allowing this discovery to PROLONG THE LIFE OF JAMES MUCKELVENE.

I will end my letter with THANK YOU, thank you for taking time out of your day to read my letter. And with that thank you for considering my request. We eagerly await your response not matter what it is, but I do want to remind you that TIME IS OF THE ESSENCE!

My God bless your Holiday Season and upcoming New Year.

                                                                                

Sincerely,

Jessica B. Ward

Muckelvene Family can be reached:

Email: forwewalkbyfaithnotsight@yahoo.com

**********

Thank you Jessi!! WE LOVE YOU!!!!!

*************

We would like to THANK everyone who took a few moments of their time to send a letter to Johnson & Johnson on my fathers behalf. You don't have ANY IDEA how much that means to us.

There is another company we would like to reach out to. Provenge. If you would like to help us with writing a letter to Provenge and/or Johnson & Johnson, please do so by using the following addresses:

PROVENGE: http://www.provenge.com/

ABOUT PROVENGE:

PROVENGE (PROH-venj) is designed to stimulate a patient’s immune system to target prostate cancer cells. The process of making PROVENGE involves the introduction of a patient’s immune cells to a protein that functions as a prostate-cancer associated antigen. An antigen is a substance that causes the body to react with an immune response. This process activates the patient’s immune cells against prostate cancer cells to help the immune system better fight the disease. Click on the graphic for more details.

Mitchell H. Gold, MD & Richard B. Brewer
3005 First Avenue
Seattle, WA 98121

If you can take a few moments of your time and write letters to these companies on my dad's behalf, we will be forever grateful! 

If you do, please send a copy to forwewalkbyfaithnotsight@yahoo.com 

PrOgReSs

My dad has been making major progress over the past few weeks. We removed him from under Hospice Care (although he was @ home) and now he's under Palliative Care. With Palliative care he was granted more physical therapy! His therapist has been working with him for 1 and 1/2 weeks and he is already standing with his walker on his own, walking around using his walker on his own and more! Take a look @ the gif clips I created :) *animated files may take a while to load.

Brandon Banks Calls My dad!

So, this weekend I was unable to post :-/ I was bummed out about it as I made a pact to myself to post once a day. I took a small 1 day getaway with my husband and went to the Paul Williams vs Sergio Martinez fight and my broadband card was not getting good service. I had loads of fun but thought about my dad a lot of the time I was there. I've always wanted to watch a fight live so my husband thought it would be good for me to get away for the day and took me to the fight. I can NOT WAIT until my dad can join us. He'd have SO MUCH FUN! I tend to feel "some kind of way" when I "enjoy" myself if my dad isn't feeling good. Like, "why should I be laughing if my dad isn't today" or "why should I do things that my dad can't right now". I've spoken to my dad about it & he encourages me to LIVE and come back to tell him about my day!

In one of my previous posts, I told you about Brandon Banks calling my dad to speak with him. Below are the photos from that night that Mecia and Belinda met him and told him of my dads story.

(photos by Belinda)

 Brandon speaking to my dad on the phone

 Redskins player Phillip Daniels, Belinda, Brandon Banks and Mecia

Today my dad has an appointment for a cat-scan. Please pray with us that his results come back to show that prostate cancer/sarcomatoid carcinoma has been WIPED clean from his body and will never return. As you have clearly seen through this blog and my dads story there is POWER IN PRAYER.

Oh, I also want to thank EVERYONE who stays up to date on my dad's story. If you have time, please follow this blog (click the follow button to the right) and it will update you every time we update the blog.Publish Post

Karaoke

While I was supposed to be working, we did Karaoke :)

~Enjoy! Back to work I go :)

Our Work

Wow. All I can say is that our "work" feels like it's paying off! All of the reaching out, posting, praying, etc. is being noticed and we are SO grateful!!! 

Last week Mecia sent e-mails to approximately 200 delegates/congressmen(women). This week we received approx. 10 responses. Two in particular have joined us in our efforts to reach Johnson & Johnson with hopes of gaining access to Abiraterone and/or suggesting another drug that may be helpful. Both Charlotte Aheart ( from State Delegate Gerron S. Levi's office) and Gigi Schwab ( from Delegate Ben Barnes office) reached out and called me to tell me that they would be sending letters on my fathers behalf. 

Letters Below:

I received an email from one of your constituents the Muckelvene family residing at [ ], concerning their father who is suffering from stage four prostate cancer.  They are aware of two new drugs that have been introduced to prolong life for men with aggressive prostate cancer.  The most effective is Abiraterone, by Johnson & Johnson and has resulted in a 35 percent reduction in risk of death and a 36 percent increase in survival during clinical trials.  The other is Provenge which uses a patient’s own antigen-presenting cells to stimulate the body’s immune system against prostate cancer.  Unfortunately, these medications have only been available through clinical trials The Muckelvene family are asking for your assistance in contacting either their insurance company, Kaiser Permanente or the drug manufacturer, Johnson & Johnson in hopes of their father being able to receive either of these medications that will help him during his illness. 

Sincerely,

Gigi Schwab

Legislative Aide

Delegate Ben Barnes

District 21

410-841-3046

410-841-3346 (fax)

***

I am writing to support the request of the Muckelvene family to access the drug Abiraterone to assist their father James Muckelvene that has been diagnosed with an aggressive form of prostrate cancer. It has come to my attention that the family has sent e-mails and letters to request your assistance. As I understand it from the research provided by the family, Abiraterone has been proven to extend the lives of men with aggressive stage 4 metastatic prostate cancer.

Often there are trials going on and overseen by the U.S Food & Drug Administration to determine the efficacy of a particular drug, and perhaps there are on-going trials in which Mr. Muckelvene can participate.  I want to offer my support to the request of this family to access the life-saving potential of this or other drugs that might assist with his diagnosis.  Time is of the essence!

Please read more about the family at http://4wewalkbyfaith.blogspot.com

Additionally, you may reach the family at 301.793.2196 or 240.671.9360. The family resides in the state of Maryland.

Sincerely,

State Delegate Gerron S. Levi

********

I also received this beautiful e-mail below: 


Good afternoon honey,

I first wanted to introduce myself to you. My name is Ronda and I am "family" to Ticona. Well not really blood family, but I've known her since she was a little little girl. Her cousin and I are best friends. I wanted to reach out to you to first tell you and God is a awesome God, and he will always always be there for us. Reading your blogs...I already know that you know that. When T first sent the email about your blog and I read it, I was in tears. The more I read the more I cried. It is a BEAUTIFUL thing to see the love that you and your family have. It reminds me sooo much of my own. We are very very close to. You remind me alot of myself when it came to my daddy. I was a daddy's girl, and your story has touched me so. My father was the best thing that had ever happen to me. He battled with cancer for a good while and he BEAT it!!! so when I say God is GOOD...HE IS!! We were able to love him and care for him for close to 9 years, so with that said...hang in there honey. My husband is the Chef...and we've been talking and we want to offer our services to cook for your daddy. Let us know when, and what he can and cannot eat, and we will do everything else.

Looking forward to hearing from you!!

Stay BLESSED
Ronda


********
How AMAZING right??????? People who we've never met are being moved to help us. Beautiful people! Spiritual people! Amazing people!

Additionally, last night my father received a phone call from Redskins wide receiver Brandon Banks letting him know that he was praying for him and that he'd like to stop by for a visit! Mecia and Belinda (our cousin) met Brandon last night during an event and handed him a letter regarding my father. Apparently, it moved him.

Today, we received a copy of a letter from our friend Mugure's friend Lawana that was sent to Johnson & Johnson. Lawana, you are amazing, we are so grateful that you took the time to write this letter to Johnson & Johnson on our fathers behalf. 

Letter to Johnson & Johnson from Mugure's friend Lawana on our behalf:

Lawana R. Batson

November 17, 2010

VIA FACSIMILE (732) 214-0332 & REGULAR MAIL

Mr. James Muckelvene

Stage 4 Metastatic Prostate Cancer Patient

I hope this letter finds you and yours in good health. That being said, I would like to

persuade your attention to an extraordinary story of a very spirited family residing in the Washington

Metropolitan area ... The Muckelvene Family; Mrs. Pearlene Muckelvene and her three (3) beautiful

daughters. Although I don't personally know this amazing family, after witnessing their

determination, testimony, faith and unwillingness to give up, I find myself feeling as though I'm the

one who has missed out.

I first learned about their awe-inspiring story from a dear friend of mine, who happens to be

good friends with, I believe, two of the Muckelvene (Chatmon) daughters. Coming from a very

tight knit family myself, and having lost a parent (my mother) suddenly to a different, monstrous

disease (heart disease) anonymous to my mom or my siblings; not having the knowledge, faith, or

time on our side for that matter to fight on her behalf has particularly drawn me to this strong,

remarkable, inspiring and God fearing family.

Thus, my focus and purpose for reaching out to you and/or your colleagues is with the

optimism that your company may find this story as heartfelt, endearing and moving as do I; and, if

so, to find it in your heart to assist Mr. Muckelvene in obtaining the drug Abiraterone, which I

understand is being manufactured by Johnson & Johnson, with proven results to save or prolong

the lives of males fighting aggressive stage 4 metastatic prostate cancer. In the alternative, reach out

directly to this inspiring family and learn a little bit more about Mr. Muckelvene's situation and their .

amazing fight from the family, first hand; or, point them in the right direction and provide them

with the guidance and/or knowledge on how to go about receiving this very necessary drug, with the

hopes of giving Mr. Muckelvene a fighting chance at beating this powerful disease which is trying to take 

over his body; and perhaps giving Mrs. Muckelvene, her girls, and their extended family the

opportunity to have their dear husband, dad, grandfather, father-in-law and friend back to normal;

strong, healthy, carefree and smiling as they've always known him to be. I don't claim to personally

know this information first hand, but from the many wonderful things that my friend has had to say

about the Muckelvene family and from reading the families amazing blog

I feel comfortable

enough saying that I find all those things to be

Coming from the outside looking in and witnessing the steadfast love, aspiration and faith

this one family has for their loved one has definitely moved me to want to at least try to help their

situation, even if it's something so minuscule as to take a few moments out of my day to write you

this letter. That being said; and, as I am sure you are aware from other stage 4 metastatic prostate

cases, time is certainly of the essence. So, my sincere, personal, covet and prayer is that Johnson &

Johnson will expeditiously make a heartfelt effort to reach out to this family to give them a little

more hope, inspiration, and possibly guidance down the right path with the anticipation of possibly

saving, prolonging or making their loved ones life that much more comfortable. If you could find

the time and find it in your heart to assist in answering this family's constant prayer, I'm sure the

family would be eternally grateful. The Muckelvene family may be reached directly at the e-mail

address listed below.

In closing, I would like to take this time to thank you in advance for taking time out of your

busy schedule to give attention to this letter. God bless you and yours; now, and during the

imminent holiday season and N ew Year!

Sincerely,

/s/

Lawana R. Batson

Muckelvene Family (via e-mail)

forwewalkbyfaithnotsight@yahoo.com

*****

Lastly, if you would like to join us in our campaign in sending Johnson & Johnson a letter as well, PLEASE do. And PLEASE send a copy to our e-mail 

Johnson & Johnsons address:

One Johnson & Johnson Plaza; 

New Brunswick, New Jersey 08933; 

(732) 524-0400

Please also send a copy of your letter to: forwewalkbyfaithnotsight@yahoo.com

We are also trying to reach out to Provenge as well: http://provenge.com/ and will begin sending letters to them also. 

GOD IS WORKING! IT'S AMAZING TO WATCH HIM WORK FOR US :) :) :)

Call-A-Bus

I am just getting a second to post the photos from daddy's chemo appointment at the beginning of the month. This was the first time we used Call A Bus to help him to and from his appointment. It happened to be raining cats and dogs that day so while I was out taking Boopity to school, I picked up a poncho and super sized umbrella to make sure he didn't get wet and catch a cold! 

putting on his new sweatshirt that I picked up from target the day before

in his new poncho

The day started off a little "iffy" as call-a-bus told my mom they were picking them up @ 12:00pm but his appointment was @ 12:00pm so that wasn't going to work. They got it straitened out and told them they'd be picked up around 11am. Since this was the first time my dad would be transported by bus, we had to figure out how we were going to help him get outside as we hadn't ever done this before. My mom and I tried putting the ramp at the front door and practicing taking the wheelchair down with one of us in it, but it was too difficult.. on top of the fact that it was raining, we quickly decided against that method. 

We then tried putting the ramp on the garage steps. That was certainly a no go since it was way too steep. I then suggested we help Daddy walk down the garage steps. Because the garage has a roof, it made more sense to go that way, have the bus pull up and then wheel Daddy to the bus. This way worked for us. It was a bit scary because my dad hadn't walked up or down steps in months, but we did it! 

Kailynn-James looking for the bus

Kailynn & Daddy waiting on the bus to arrive. She wanted to sit right beside my dad in her stroller.

Mommy shielding Daddy from the rain getting on the bus.

Although there was confusion with the pick up time (going and coming home) my Dad still said he enjoyed his bus ride :) 

James'sWarrior Granddaughter Is invited to speak at Youth Revival

This is James Muckelvene's Granddaughter , Pearline Muckelvene and she is only 13. I am a Proud Mommy (Jamecia).

We Thank Music Man Ministries (Cristopher Randolph) for inviting us to his church to share our story. And Ja Franklin, the Acclaimed Artisan Videographer. Such Awesome work. We Thank Ja so much for being one of GOD's Vessels and all the work(s) him and his wife Tracey are doing to help us on this Walk of Faith. GOD bless them and their Family.

Letter to Johnson & Johnson from Elbie

Today I received a copy of the letter Elbie is sending to Johnson & Johnson. Please read it below:

Dear Sir/Madam,

I am writing this letter to you, primarily, in the hopes that it finds you in good health and spirits. I do hope the new fall season has been very prosperous and joyous for you, your friends, and family. 

In addition, I am writing to share with you the story of a beautiful family and the father/grandfather/husband that has been the backbone of it for over 35 years.

James Muckelvene is a hard-working and devoted husband to Pearline Muckelvene and a loving father of 3 daughters who have all blessed him with a total of 8 grandchildren. Being a witness to, and a participant of, the many accomplishments of his offspring has been one of life’s greatest rewards for him, and those family members have become the backbone of support that he now needs from them.

The intensity of the hope and prayer in this family is not one that I can easily put words together to describe. What I can say, however, is that I have literally seen this man MAGICALLY transform from a “cancer patient” into a literal beacon of light. His smile brightens up any dark room, and the absolute love and prayer that is surrounding this beloved man, is life-changing, to say the least.

Approximately a year ago, Mr. Muckelvene was diagnosed with stage IV metastatic prostate cancer. Since his diagnosis, every measure has been taken, medically, to attack the progress of this disease. It was promptly discovered that the cancer had also spread to Mr. Muckelvene’s bones and was causing him a lot of pain as well as gravely restricting his movement. The oncologist recommended that he undergo spinal surgery, as well as hip surgery on both hips, to assist his bones in recovering from the cancer’s ravenous damage.

Post-surgery, Mr. Mucklevene was released into the care of hospice where they were instructed to simply, “make him comfortable”. The family wouldn’t hear of such a thing, and he was promptly taken to his youngest daughter’s house with the instruction from God to: “make him RECOVER”. Which brings me to you.

The Mucklevene daughters have been researching aggressively for ways to help their wonderful father fight this war against his body, and came across the drug that is under production at Johnson & Johnson called Abiraterone. I am asking you to help Mr. Mucklevene by administering this drug. Even though it isn’t available until next year, I understand you are running clinical trials and he would be an ideal case study. Time isn’t on our side with this disease and every second counts, I thank you in advance for any assistance you can provide in this matter.

Please find the calling in your heart to provide a miracle for this family, and supply Mr. Mucklevene with Abiraterone. God bless you and yours.

Sincerely,

Elbetel Bekure

***

Who is Elbie you might be wondering? Elbie is one of the friends in my life that I put best in front of. There are only 2 (not counting my husband). Her taking time to write to Johnson and Johnson for us doesn't surprise me one bit... The way she put the words together to reach them does however touch me. She is such a BEAUTIFUL friend.

Thank you Elbster! :) :) :) 

To everyone else, if you can find the time to also send a letter to Johnson & Johnson on my fathers behalf, PLEASE do and please send it to us as well. 

Johnson & Johnsons address:

One Johnson & Johnson Plaza; 

New Brunswick, New Jersey 08933; 

(732) 524-0400

Please also send a copy of your letter to: forwewalkbyfaithnotsight@yahoo.com

We are also trying to reach out to Provenge as well: http://provenge.com/ and will begin sending letters to them also.