It’s almost time

Dearest Friends and Family,

We write to you with a date for the record books: November 10th is the day we saw GOOD BYE and GOOD RIDDANCE to my immune system. This is a day we are simultaneously looking so forward to while also eyeing with great trepidation and a bit of fear. A transplant date of November 10th is a little later than anticipated for a couple of reasons. 1) apparently there was a flood of transplants that needed to get scheduled at SCCA and I was not the first one on the priority list. Absolutely no complaint from me on this one, I’m happy to not be considered top priority in this case. 2) We want to make sure that I incur a majority of my costs post-November, after I enroll in my health insurance at work, to help mitigate unnecessary out of pocket expenses.

I will quit working in the office on October 1st, as I cannot get sick before transplant, and will work from home until October 16th. October 20th marks the first day of my massive work-up. From October 20th thorugh November 2nd, I will be having numerous consults and undergoing numerous procedures including a bone marrow draw and placement of a central line in my chest. On November 6th I start chemo as an outpatient. I’ll go in three consecutive days (Fri, Sat, Sun) and then they will give me a rest day on Monday. Tuesday I’ll be admitted to UW and will receive (probably) two rounds of total body radiation in the morning and then the cells will be dripped into me that night. By Wednesday afternoon I’ll be discharged and on my way with a brand new, albeit non-functioning as of then, immune system.

For the first 100 days post transplant my world is going to become very small. It will consist of our home, Optimus Prime (my car), a 15 mile stretch of I-90, about 2 miles of downtown Seattle, and the beautiful Seattle Cancer Care Alliance. I will be at SCCA everyday for the first week or so post transplant. The frequency of my trips there after will depend on how my body is responding to the new marrow. SCCA will actually provide me with the only real ‘public’ interactions I will have for a while. Which means, that over these next few weeks I will be compiling a list of craft projects, books, and DVDs that must be accomplished, read, or viewed! If you have any suggestions, please send them my way – I’d love to have an impossibly long list just in case! ; ) In this regard, please note that if you must send us something, which I cannot stress enough how unnecessary it is, we cannot accept flowers. Instead, please send us your favorite book, DVD, game, crossword puzzles, or whatever it is you do during your down time. Those gifts will go a long way in preserving my sanity and the flowers, unfortunately, cannot come into the house at all.

Finally, we again want to express to you how deeply thankful we are for each and everyone of you. Your support and love over the past few months and even years means more to us than we can say, and has without a doubt helped us get through this very trying time. We take great, great, comfort in knowing that we have such an amazing community of friends and family praying us through this mess. : )

In great love and appreciation,
Alyssa & Kyle

the KOMO update

we will never be able to thank you enough

I’ve been waiting since March to say this……

Yesterday Kyle & I got the news that Regence has approved our request for transplant!!!!

I am overcome with emotion and relief today. I’m also elated as I am now grasping that the rest of my life is waiting for me. Mine and Kyle’s world has been forever changed and we can now walk forward in great Hope. By an indescribable amount of grace, we are sustained and encouraged. Even in times when it was hard to see, God’s hand has never failed to cover us.

Yesterday, Kyle and I also met with two of the doctors who will be on my transplant team at Seattle Cancer Care Alliance. There was A TON of information thrown at us and the process before us is nothing less than daunting. However, I would like to share some of the details with you all so that you can pray accordingly and continue to stand along side of us as we embark on this next leg of our journey.

Here is what we know:

1) None of my sibs are a match, unfortunately. However, my HLA type is common enough that they are very confident they will have a match for me shortly. In fact, they already have a list of prospective matches that they prepared just in case we received the approval. Please pray for this process to a swift and seamless one.

2) 5-10 weeks is the preparative time we have before transplant. During this time I will be having numerous consults with numerous docs at Seattle Cancer Care, all in efforts to ready my body and my team for the transplant. In the 2 weeks prior to the procedure, I will be receiving radiation and chemo to help make room in my body for the new marrow. This regimen will be much less intense than if I were getting transplanted for malignancy so the side effects will not be as severe. Please pray that I handle the treatment well and that Kyle and I remain patient through this exhausting time.

3) All care will be done as outpatient care, except for the transplant itself. The transplant really is nothing more than an IV – I will be awake and should not feel any side effects while the new marrow is being infused. The two weeks post transplant is a critical period in which my transplant team, through daily blood draws, will be looking for signs of ‘engraftment’ or signs that my body is accepting the new marrow. I will basically be without an immune system for the 3 months post procedure. PLEASE PRAY THAT I DO NOT DEVELOP COMPLICATIONS AND REMAIN HEALTHY.

There are still many unknowns, one of which is the cost of the transplant. Our friends, family and community are putting together fundraisers to ensure our financial stability when we close this chapter of our lives. Continue checking this site to find out more.

Undoubtedly, you all have changed the course of our lives. I truly believe that had it not been for the phone calls, emails and letters to Regence and the multitude of prayers on our behalf, we would not have made it to this point.

Thank you a thousand times over.

Kyle and I have seen God’s faithfulness revealed to us in so many different ways through this process and you all serve as a testament to that. We are comforted knowing that we have the support, prayer, love of you all, and the hand of Our Father holding and carrying us through every step of this arduous journey. An end, well no, a new beginning is in sight and we could not be more grateful for the Hope that is ushering us into what promises to be a new life for myself, Kyle, and the rest of my family.

In great love and sincere thankfulness for each and everyone one of you,
Alyssa & Kyle Olsen

… still waiting

We apologize for the lack of updates around here. Despite our hopes to hear something by the end of last week, a decision regarding Alyssa’s third appeal has yet to be made.

What we do know for sure: No matter what, we need to raise money. 

Even if the third appeal is approved, Regence will only cover $250,000 of the costs associated with the transplant. The cost for Alyssa’s transplant at Fred Hutchinson is double that.

Alyssa and Kyle are looking at other hospitals where her treatment may be cheaper, but this leaves them with travel, relocation, and lost salary expenses (not to mention the difference between the cost of the transplant and what Regence will pay).

You all have already been so generous and given over $3000 to Alyssa’s medical fund. But, we need to raise more. We’re beginning to plan fundraisers, we will let you know more as details get firmed up.

If you would like to help, please email alyssaolsenmedicalfund@gmail.com and we’ll get in touch with you.

Alyssa and Kyle are exhausted from this fight but beyond grateful for everything you have already done.

- Anne

Why we must demand action, now.

As I watch our battle for Alyssa’s life unfold, I feel lucky, grateful, in awe — and frightened. We were recently asked why we have asked you all to contact your elected officials and demand health care reform. “What does Alyssa’s case have to do with health care reform?”

It’s simple really. We are asking you to demand reform for Alyssa and for all the others who are fighting for their lives while battling their insurance companies. For the others who do not have Alyssa’s same education, same resources, the same family or the same community. Because of your work, I have little doubt we will win this battle against Regence… but others might not be so lucky.

Alyssa’s grandmother recently informed us of Bill Moyers’ Journal on Health Care Reform on PBS. Moyers tells Natalie Sarkysian’s, a story that has hit a little too close for home for those of us involved in Alyssa’s fight. If you watch nothing else of this piece, please watch the last two minutes.

“At the end of 2007, Potter defended Cigna when it refused to pay for the 17-year-old’s transplant surgery, claiming the procedure was experimental. Protests at a regional headquarters created a public relations nightmare. Cigna reversed its decision, but by then, it was too late. Natalie died just two hours after her surgery was approved.“

We must demand approval from Regence, now. We must demand health care reform from our elected officials, now. Access is not the only problem with our health care care system; cost containment, denial based on pre-existing conditions, admitted unnecessary appeals processes, and contract language are other issues that must be addressed, now.

We must demand action now —  before someone else dies because they are denied treatment.

What does Alyssa’s story have to do with health care reform? Alyssa was denied because of the cost of her treatment. Regence is hedging their bets, several more years of treatment is cheaper than a transplant. Her story is just one example of how broken our system is — a system where decisions are made by insurance companies based on costs, not by doctors based on care and well-being.

This is America. Heath care should be a right, not a privilege. Health care should be available without a lawyer.  Health care should be available without a public relations nightmare. This is America.

Thank you for everything you’re doing. I promise you it is making a difference.

To contact Sen. Patty Murray click here.

To contact Sen. Maria Cantwell click here.

To contact your congressperson click here.

To contact Gov. Gregoire click here.

To find  and contact your state representatives and senator click here.

- Anne

Progress

Friends and family,

It is my pleasure to write to you and let you know that we have seen forward progress today.  I was asked to meet with both the medical director and president of Regence Blue Shield of Washington today at 3:15pm.  Of course, I obliged.  The outcome of the entire situation is yet to be decided but, I can guarantee you this: YOU ALL HAVE DRASTICALLY CHANGED THE COURSE OF OUR BATTLE. The tides have changed, Regence has heard us, and we have reason to hope.

Thank you for selflessly giving of your time and effort to advocate for us.  Thank you for putting your anger aside and crafting letters that these influential people at Regence not only read, but listened to and respected.  Thank you for loving us enough to stand alongside of us and demand a different life story for me than what Regence had previously written.  We are eternally grateful and deeply humbled by your support.

Now, please take this time to continue to encourage Regence and especially your local representatives and our state senators to act.  No one should have to fight this hard for their life.  Our Senators and Represenatives have an obligation to act in agreement with us; to advocate for change which will not allow the story of Alyssa Olsen to be repeated.  We need change that ensures that the thousands of others, just like me who are already battling their own bodies to stay alive, do not have to battle others to guarantee their right to life.  Now is the time to make sure our story serves as a catalyst for major change throughout this country – starting with our great state.  This is only the beginning……..

To contact Sen. Patty Murray click here.

To contact Sen. Maria Cantwell click here.

To contact your congressperson click here.

To contact Gov. Gregoire click here.

To find  and contact your state representatives and senator click here.

~ Alyssa

thank you, thank you 3,000 times over

In the last 36 hours over 3,000 of you have shown overwhelming and inspiring levels of support for us. Kyle and I feel such relief as we have been lifted up and surrounded by our community of family, friends, and, what once were, strangers. You have written letters, you have called Regence and made your case, and you have donated your money to help me receive a bone marrow transplant. Because of your generosity we are now able to start the process of having one of my siblings tested to determine if they are a transplant match. I had almost come to a place where I thought this day would never come and words cannot describe how blessed we are that this reality is occurring.

However, the truth is that this fight is just the beginning. Transplants must be completed in the summer months, as this already risky procedure drastically increases in risk during the rainy and cold months of the Northwest’s fall and winter. If we don’t get Regence to reverse their appeal quickly, we will be forced to wait another year for my transplant. That is another year I am forced to go to bed exhausted only to wake up exhausted; another 365 days of coughing; another 8,760 hours of a heart rate that puts more stress on my body than is safe; another 525,600 minutes of time that I could be living as any other 24 year old should be and am instead left waiting in what can only be described as a broken body.

Please, please:

• Write a factual and unemotional letter to the editor of your local paper and tell them why you’re upset with the Regence BlueShield’s decision to deny Alyssa Olsen’s life-saving bone marrow transplant, and make sure your letter is a plea for greater national health care reform. Alyssa is only one of thousands in this country who are in desperate need of better health care.
• Email Joseph Gifford, Chief Medical Officer of Regence BlueShield Washington, and the man KOMO News interviewed, at jgifford@regence.com. Tell him you are disappointed by his response. Regence’s policy to deny claims which sends claims to a third-party for review forces patients to continuously petition for treatment when they are in need of timely medical care. Tell him you are concerned that more cases are approved by a third-party than by Regence. Ask him how many people have been wrongly denied because of this policy in the past or will be in the future?
• Email Jonathan Hensley, President of Regence BlueShield Washington at mjhensl@regence.com, a factual and unemotional letter telling him that you are disappointed in his company’s decision to deny Alyssa Olsen’s life-saving bone marrow transplant.
• Call 206-470-4789 and talk to Barbara at Regence BlueShield Washington and politely and unemotionally let her know that you are disappointed in Regence BlueShield’s decision to deny Alyssa Olsen’s life-saving bone marrow transplant.
• Contact Senator Patty Murray and Senator Maria Cantwell and tell Alyssa’s story to encourage them to work for greater national health care coverage.
• Share Alyssa’s story with your network of friends and colleagues on Facebook, Twitter and email.
• Donate funds at foralyssa.wordpress.com to help Alyssa find a bone marrow donor match and fund bone marrow and stem cell transplant research.
• Sign-up and become a bone marrow donor yourself at www.marrow.org.

- Alyssa

What You Can Do To Help

• Write a factual and unemotional letter to the editor of your local paper and tell them why you’re upset with the Regence BlueShield’s decision to deny Alyssa Olsen’s life-saving bone marrow transplant, and make sure your letter is a plea for greater national health care reform.  Alyssa is only one of thousands in this country who are in desperate need of better health care.

• Email Joseph Gifford, Chief Medical Officer of Regence BlueShield Washington, and the man KOMO News interviewed, at jgifford@regence.com.  Tell him you are disappointed by his response. Regence’s policy to deny claims which sends claims to a third-party for review forces patients to continuously petition for treatment when they are in need of timely medical care.  Tell him you are concerned that more cases are approved by a third-party than by Regence.  Ask him how many people have been wrongly denied because of this policy in the past or will be in the future?

• Email Jonathan Hensley, President of Regence BlueShield Washington at mjhensl@regence.com, a factual and unemotional letter telling him that you are disappointed in his company’s decision to deny Alyssa Olsen’s life-saving bone marrow transplant.

• Call 206-470-4789 and talk to Barbara at Regence BlueShield Washington and politely and unemotionally let her know that you are disappointed in Regence BlueShield’s decision to deny Alyssa Olsen’s life-saving bone marrow transplant.

• Contact Senator Patty Murray and Senator Maria Cantwell and tell Alyssa’s story to encourage them to work for greater national health care coverage.

• Share Alyssa’s story with your network of friends and colleagues on Facebook, Twitter and email.

• Donate funds at foralyssa.wordpress.com to help Alyssa find a bone marrow donor match and fund bone marrow and stem cell transplant research.

• Sign-up and become a bone marrow donor yourself at www.marrow.org.

Words cannot convey…

Words cannot begin to convey how overwhelmed with gratitude Kyle and I find ourselves tonight.  The response we have received  is……..awe inspiring at the very least.  We have been surrounded with love and support at a time in our lives when I have honestly never felt so abandoned.  It is a testament to just how great God’s love is for us and how much we, regrettably, underestimate the power, the value, and the necessity of our friends, our family, our community.  Thank you seems inadequate, but it is in fact what we have to offer.  Our sincerest, deepest thanks for lifting us up and holding our heads so that we no longer have to do this on our own.  This battle seems greatly outnumbered in our favor.  Regence stands no chance.

I received a phone call a little while ago with a request that I never for one second imagined we would get…..”where can people send money?”  The truth is, there was never any expectation that this would turn into a fundraiser.  I am amazed that Kyle and I even had to discuss this.

We have set-up an account that is found on this page, and the money we raise will first go toward finding me a match.  As most of you know, we have not even begun testing my siblings to see if they could be transplant donors for the transplant because Regence’s denials.  It costs around $5,000/person to be tested.  If during this process, we receive the approval from Regence, we will donate any remaining funds to bone marrow & stem cell transplant research, most likely at the Fred Hutchinson Research Center.

Besides my health, Kyle and my  greatest hope in this is that a transplant will no longer have to be something a person must fight for. Rather, it will be a therapy that is given without question to save a life.  In order for that to be realized, more researchers need to be financially supported so that they can publish scientific works validating the use and success of transplant in patients like me