We are on our way!!!!!!

Look below for our updated posts.

My First Blog

Hi Everyone,

My name is Mark Buenconsejo. I currently live in San Diego. I was raised in Hawaii and moved to San Diego in 1998 to be with my wife Hilary. I have 3 daughters. One lives in Vegas, one back in Hawaii and one here in SD. I have also been blessed with 2 grandchildren. My dad and mom, my brothers and one of my sisters lives in Hawaii. I also have a sister that lives In Texas. My real mother lives and supports me here in California.I have started this blog to chronicle my life living with a disease called Systemic Scleroderma, a terminal disease.

Prior to Scleroderma I was very active, surfing, playing golf and all around in good health.I was given my positive diagnosis in June of 2006. The term Scleroderma means hardening of the skin. Scleroderma, is a disorder accompanied by widespread vascular deterioration and tissue loss. The body attacks its own tissue, causing an overproduction of collagen, ultimately ending in pain and death. Some forms cause significant thickening, hardening, stiffness and swelling of the skin and joints, along with extreme fatigue and pain. It attacks the internal organs resulting in damage and failure of the heart, lungs, kidneys, esophagus, and intestinal tract. Currently there is no known cure for systemic Scleroderma. 70 percent of patients with Systemic Scleroderma die within 5 to 10 years. Over 300,000 people have Scleroderma, and out of this 10 to 15 percent have severe Scleroderma. I, unfortunately, have the severe type of the disease. It is currently in the tissue of my hands, arms, face, torso, legs and feet. It has also started moving through my internal organs, my lungs and my esophagus. I am currently unable to work due to the severe discomfort and crippling effect on my hands.

My doctors’, my wife and I have decided it is time to take charge of this disease. There is a study starting in Seattle, Washington that will use an allogeneic stem cell transplant. This is a bone marrow transplant taken from a donor. The hope is that if the doctors’ will bring my immunity down with chemotherapy and radiation, introduce stem cells from a donor’s marrow, that my immunity will come back stronger without the disease. The doctors are very hopeful and so are we. This is a lengthy process and not without risk. It will be very expensive for me and my family as we will have to relocate to Seattle for an undetermined amount of months while I am undergoing treatment. We are currently working with our insurance for approval of the procedure itself, which in most cases is the deal breaker because the cost is very prohibitive.

My family and friends will continue working on fundraisers for my wife and me for travel expenses, housing, unexpected medications and treatments, and day to day living. With me not working, it has become more and more difficult to survive in this economy. Not to mention to survive with Scleroderma.

Please keep checking back for more events for we will not stop until we have gotten the approval from the insurance and we are up in Seattle.

My wife and I would like to thank our family for there support and prayers. We would also like to thank all of our friends that have added us to their prayer lists and continue to help us during this time. Without you all we are not sure what we would do. Most of all we would like to thank the Lord for he is always looking after us and giving us the strength to get through this.

Sunday, June 14, 2009

We are on our way!!!!!!

Hi Everyone,

We have great news!!!!!! We have just recently learned that they have found a cord blood match for Mark. "Cord blood" meaning stem cells taken from a baby donors umbilical cord. I waited a bit to send out this blog because everything was still weighing on the fact that Mark still had to take a pulmonary function test and test higher the 30% if it was lower we would have been disqualified all together.

He took that test on Friday and tested 35% so that means "We are on our way"!

What this means is we will be leaving for Seattle July 13Th to start all the preliminary tests and prep for the transplant. This will take two weeks. If all goes well and the insurance gives us the final go ahead we will then start 6 days of intense Chemo, on the 7Th day total body radiation and immune system eradication. Mark will then be ready for transplant. We are looking at the whole month of August to be spent at the University of Washington Hospital. Marks complete stay in Seattle will be no shorter then 100 days from transplant so his relocation back to San Diego is mid November. We are nervous anxious and excited for this process to start and complete with a successful out come.

I just wanted to take a minute to "Spread the word". There is 5.4 million mixed race people in the United States at this time their are only 212 thousand mixed race people in the bone marrow database. This is an easy process to join the data base just a swab of your cheek cells and your in. The key is that you have to be willing to give to anyone. Just know that when you receive that call it is not a call to give and have your marrow sit on a shelf it is to give and "SAVE SOME ONES LIFE"!!!!!! At this time there are 6,000 mixed race people waiting for a match. Some of which will never find a match. Please help us to to "Spread the word". and help save lives.

http://www.sandiegobloodbank.org/bone_marrow/

Once again we are continue to thank our friends and family for your prayers, love and support. I will be blogging much more in the future when we are up in Seattle.

Much love and aloha,
Mark and Hilary
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Wednesday, March 11, 2009

Bone Marrow Drive

For all of you that have been asking how you can enroll in the bone marrow program please see the following link. There is a bone marrow drive next Tuesday at Intuit a local company here in SD. Please "spread the word" to family and friends that would like to participate as well.

Thank you, much love and aloha,
Mark and Hilary

http://www.marrow.org/HELP/Join_the_Donor_Registry/Join_in_Person/drive_details.pl?drive_key=007-4-00408

Intuit
7555 Torrey Santa Fe Road
San Diego , CA 92129
March 17 2009
8am-2pm
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Monday, March 02, 2009

GREAT NEWS!!!!!

Hi Everyone,

I wanted to get out this great news we recieved today. I finally was able to send in our State medical review form after I collected letter from Cigna, doctors in Seattle, UCLA and here in San Diego. They deemed our request urgent and gave us 7 days to review our case and get back an answer.

Well here it is. The Department of Managed HealthCare has overturned Cigna's decision to deny treatment for the transplant.

We are so happy. We know that this is just the first step and we now need to find a match. But we will have the funds to be fast and accurate.

Wow!!!! oh and more great news. Mark feels great!!! He has gained 15lbs and feels stronger and stronger everyday.

Thank you to everyone for your prayers, well wishes and support. We are lifted up daily and we will continue the fight. This is not over until we can say that we have a clean bill of health.

Love you all,
Hilary and Mark
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Sunday, January 11, 2009

Continue to "Spread the Word"

Hi Everyone,

Mark and I want to thank everyone for your support.  We have some great news and some not so great news.  

First of all the great news.  Mark has gained a healthy 9 pounds.  I am so proud of him.  He has been taking some herbal health food as a daily supplement.  He looks and feels great.  

On to the disappointing news;  I have received news that Cigna our insurance company has refused to look at our last appeal.  They said that we have exhausted our appeals and that they will not be looking at the last recommendation of our doctor in Seattle and UCLA.  It has been recommended by our doctors in Seattle that we should now seek legal council.  

Although this is bad news this is news we expected at this point, I assure everyone we are not going to give up.  We will continue to fight and we ask that everyone continue to "Spread the Word".  I recently sent out an email that asked everyone to sound off about an article written about a teen age girl that lost her life waiting for Cigna to approve her liver transplant.  It took a march from friends and family and I believe a calculated closeness to the end of her life.  Cigna conveniently overturned her denial just hours before she slipped into a coma and died.  We can't let this happen to Mark.  

Always thank you for your prayers, your well wishes and aloha.

Hilary and Mark

Article of the seventeen year old girl that lost her life waiting for Cigna




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Tuesday, December 16, 2008

Just a little good news

Hi Everyone,

We received a call from our insurance today they said they will finally give us information that we have been requesting for the past month. This will hopefully give us all the information we will need to send our next appeal. With the help of the Drs in Seattle we will putting this together as soon as possible.

We also are working on putting together information to send out to the Department of assistance for an Independent Medical Review. This will provide an impartial review and could help in our plight for a positive decision to cover Marks treatment in Seattle.

On another note, our fundraisers went great, so Mark and I have made a decision to take funds that we have collected and start paying for the testing of Marks blood and to have his brother tested to see if they are a match to Marks stem cells. This is one of the procedures that the insurance has agreed to not cover. We are hoping that if JR or Michael are a match it will help in the decision to give us approval on just the transplant itself.

In the mean time Mark is in great spirits. He has continued to gain weight. We will have to stop his chemo this month for he has developed lesions on his corneas and the ulcers on his hands are slow in healing. Our Dr here in SD would like to stop, go through a round of antibiotics and start back in January.

We continue to thank everyone for your prayers and donations. We will not stop this fight our confidence in prayer will not let us.

HAPPY HOLIDAYS EVERYONE!!!

Mark and Hilary
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Wednesday, November 19, 2008

Luau Fundraiser!!!!

We had such a great time at the luau. I can not thank Angel and our Leiisa family enough for the hard work, dedication, and determination to make this event successful. Special thanks to our special guest, Miss PIFA Katie Martin, Pualani's, and Healii O Na Lani and her daughter Healii. Mark and I were honored to be in all of your presence.

We are back to work trying to get the insurance to give us approval. I have been on the phone every day trying to get information for our new appeal with the state and trying anyway possible to make Seattle happen. Please know that I will not give up until we are sitting in Seattle and Mark is on his way to recovery.

We have Chemo scheduled on the 20Th and an appointment to see Dr Furst our specialist in La on the 25th.

With that said please continue to spread the word. With constant awareness of this disease we will prevail not only to help Mark but to help others struggling to fight this crippling disease.

Once again thank you for the strength in prayer that we receive daily from our friends and family. Please continue to look for updates for I will be writing more often.
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Monday, November 10, 2008

O'Harley's Fundraiser a complete success!!!

Hello,

Its Hilary, Marks wife. We wanted to thank Everyone who came out to Harley's this weekend to make everything a success. There were a few people that helped us out tremendously that I wanted to personally thank.

Mindy Gourdarzi-We thank you from the bottom of our heart your hard work and dedication really made this fundraiser happen.

John and Rosie Bell- I am sorry you could not be there. We thank you so much for all your hard work hitting the pavement and getting us all of the raffle items and dedicating so much time to help us out.

The Reyna Family- I can't thank you enough. The flyer's, the pictures the programs, the dancing, the love we are so lucky to have Friends like you.

My Mom-I Love you I love I love you. Thank you for spreading the word!!! to the news paper to the news to the universe :)

Geoff Julie Noah Jonah Cameron-The music was awesome. I am so proud of my family you are all so talented!!!!!!!

Sable- You are one of the family I hope you know that. We love you!!!

JR and Janine- We love you thank you for the letters and verb age. We use "Because we Care" on everything.

Everyone, thank you for the warm wishes and the prayers. We are so thankful to have friends and family like we do. We look forward to another successful fundraiser with the Luau at San Diego State/KPBS, we can't wait.
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