MJB Scleroderma

Updates from Seattle

2009-07-31T19:41:00.001-07:00

Hi Everyone,

We are sorry we have not posted in a bit, things have been very hectic up here. Just a note we post a bit more on FB if you get a chance.

So just a little of the madness, we have seen every Doctor for every part of Marks body, given a ton of blood, been poked prodded and abused and he is still hang'n in there. All in all everything looks good, but I must say we are still at the mercy of the insurance. They have the final say and our schedule has been held up because of them. So as of today the Insurance has until Monday to hopefully say "yes". If so we are back on track preparing for Marks hospital stay and the start of Chemo. Chemo is so far scheduled for Aug 12th and the transplant is to be given August 18th.

We would like to say thank you as always to our friends and family for your support, well wishes and prayers. We would not be this far if it were not for you.

Love and Aloha,
Hilary and Mark

I am off to Seattle

2009-07-12T22:52:00.000-07:00

Well everyone it is the night before we leave for Seattle and I would like to thank all of you from the bottom of my heart. I know its because of all of you that I have made it to this point. I am excited and nervouse at the same time but I know I am not alone. I am sure there will be good days and bad days but I will keep each and everyone of you in my heart always. We will try to post as often as we can.

God Bless we love you all.

"Still Spreading the word"

2009-06-22T15:39:00.000-07:00

Hi Everyone,

We are were lucky enough to meet a very nice man from the North County Times that has been following Marks story please click on the link to read his 3rd installment in the North County Times

http://www.nctimes.com/articles/2009/06/21/news/inland/poway/z2dc566beadaab2e5882575d7007fdcc1.txt

Thank you to Gary!!!

And for those of you that live in SD please watch channel 7 NBC at 4, 5, and 6pm tonight and see Rory Devines interview with Mark :)

Love and Aloha,
Mark and Hilary

We are on our way!!!!!!

2009-06-14T13:14:00.000-07:00

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

Bone Marrow Drive

2009-03-11T23:16:00.000-07:00

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

GREAT NEWS!!!!!

2009-03-02T17:04:00.001-08:00

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

Continue to "Spread the Word"

2009-01-11T20:42:00.000-08:00

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

http://www.msnbc.msn.com/id/28393752

Just a little good news

2008-12-16T16:02:00.001-08:00

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

Luau Fundraiser!!!!

2008-11-19T11:31:00.000-08:00

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.

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

2008-11-10T15:54:00.000-08:00

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.

10-01-08 Thank you Everyone for your Support!!

2008-09-29T09:36:00.000-07:00

Hi Everyone,

Mark and I (Hilary) have started sending out this blog and have gotten a very warm response. We would like to thank those that have forwarded suggestions to our email site, we will actively be trying to update this site as fast as we can. Don't forget to look for the updates on our up coming fundraisers at O'Harleys and San Diego State KPBS Studios. Please get the word out to everyone that knows Mark, myself Hilary (Marks wife), or any of our family members. It will be much appreciated.

To give just a brief update, Mark had carpal tunnel surgery yesterday and everything went great. The doctor was able to clear out some of the scar tissue from the scleroderma that was causing his hand so much pain. We hope this will make his hand more flexible and useful.

We have set up an account for all donations and monies made from the fundraisers. We have also set up a P.O Box for mail donations and letters. We would love to hear from you.

Please know that all monies made will go towards medications, travel expenses and all the extra expenses that the scleroderma has caused. Thank you again everyone for the kind words and prayers,

Love Mark and Hilary