A Picture is Worth a Thousand Words.....

TWO MONTHS IN ONE BLOG

Working from home March 2014

 So much has happened in the last 2+ months and it was difficult to find the time to sit down and keep up the blog between working full-time, supporting two full-time missionaries and taking care of one pretty special, amazing guy, so, as the saying goes, a picture is worth a thousand words. And I figured those of you who are following the blog would rather see pictures than read a lot of medical mumbo jumbo anyway right? I like to SEE what's happening, so here you go  -  with a brief update of the last two months.

Just after first platelet transfusion

 The goal of chemotherapy has always been just a short-term solution to keep the cancer at bay until a transplant could be performed with donor transplant cells. This particular chemotherapy can only used approximately six times.  We've just completed a very, very difficult third round.




So what's next? Is the transplant on the horizon?

February 14, 2014

Not the best Valentine's gift.

A letter from our insurance company dated February 14, 2014 states authorization has been DENIED for the allogeneic transplant stating that it is considered "Investigational and Experimental" and therefore is not approved and not covered.  After the shock, tears and disbelief wore off, then it was time to get to work.  What were our options now?

1) Chemotherapy only (up to six treatments with the current regimen) and then continue to try other chemotherapies until no chemotherapy options were left;

2) Find a clinical trial that would take our case within specific parameters that met the criteria that insurance would then HAVE to pay;

3) Write an appeal to the state Dept. of Managed Health Care (DMHC) and hope they would overturn the insurance decision, which we were told was very unlikely.

Another blood transfusion, but as always he's such a good patient

We started looking into clinical trials, starting with Stanford. One department said no, we don't have any trials, another department said, we might, we'll get back to you.  So we waited and waited and talked to one person who talked to our doctor, who got back to us and said maybe, someone should be calling you. End result - no trial. Next we started talking about checking City of Hope in L.A. for a trial, but in the meantime, I started to put together an appeal to DMHC. It was a longshot but it had to be tried.

Bald is beautiful!!

To the rescue, to whom I can never truly express the depth of my gratitude, came a dear family friend of ours who has some personal experience in composing and presenting appeals.  He coached me, helped me and guided me, gave me helpful tips and format ideas, etc. as I put together the appeal, which included a summary of Scott's cancer treatments, a letter from his doctor and research that the doctor provided me to substantiate our claim. Due to the imminent need for treatment (criteria being death was imminent within the year) we were granted an expedited appeal process and were told we would receive an answer to our appeal within 10 days of receipt of our appeal.

Our 30th Anniversary, April 21, 2014

On April 2, 2014.... we received a letter in the mail from the Department of Managed Health Care.  They had read our appeal.  They had three independent physicians on the panel who had the power to make the decision either way, uphold or overturn.....All three vote to OVERTURN  the insurance decision.  The transplant is APPROVED by DMHC and our insurance company is immediately instructed to comply with their reversal and approve all transplant-related expenses.  It is truly a MIRACLE!!!!

Easter Sunday, April 20th.  A Good Day!!. 

Where We Are Now

As I mentioned above, we just finished a very difficult third round of chemotherapy. We are just keeping Scott as cancer-free and healthy as possible until everything is in place for the donor transplant.


Five strong, healthy male donors have been identified from the national donor pool as a match.  They all live outside the United States.  We are waiting for information from the doctors on what the timeline is to receive their stem cells and start prepping Scott, once he is strong enough and healthy enough to handle the rigors of a donor's cells.  This will include anti-rejection medications to start. 

For now, we cherish each and every day and never take a day for granted.  Each day is a blessing!!!

May 24th. Sick in hosp, but still smiling!

 

 

Just heard he gets to go HOME!

 "Special Blessing" Plant from
my co-worker's daughter to Scott.