Burt Family 2013

Burt Family 2013

Friday, March 25, 2011

Beautiful Day at the Zoo!


We were able to enjoy a beautiful day at the zoo last Saturday.  All the animals were out entertaining the crowds, we all had a great time getting out and doing something fun as a family.  However it was a much different visit from the last time when we were there a couple months ago.  Max is doing so well that he is able to keep up with the girls and now we have 3 little independent kiddos running in all different directions. We broke out the leashes to help us manage the chaos.
Max and Molly loved watching the penguins!


Thursday, March 3, 2011

2nd Insurance Update

We haven't made a lot of progress since last month.  Our Oncologist has enlisted the help of colleagues around the nation to agree that the medication Max is taking is medically necessary and we are hoping it will help build our case.  The hospital has also helped us by gaining the help of an attorney to represent us and the doctors with all the communication between Regence. This will be a huge relief for me so that I can focus on being a mom and caregiver and not on the legal research and negotiations that go back and forth.

We also made the decision to change our insurance plan, we have found a better plan through Josh's work that actually advertises that they cover clinical trials.  We only had 4 days to research and make the decision.  We are hoping that a change at this point in the year will pay off, it should give us slightly lower monthly rates, co-pays, a lower stop-loss for the whole family, and better benefits. We have already maxed out our benefits from January, but this was the only time we could change with Josh's open enrollment.  We are in process of starting over on all the pre-authorizations needed for all of Max's expensive drugs and procedures. We are hoping that all this work will pay off and this new plan might make life a little easier for us.  We might even qualify for a grant through the insurance company that helps hard working patients who fall through the cracks with private health care insurance. We appreciate your continued prayers as we step out in faith with this new plan. 

Chemo - Round 4


I am so sorry that it has taken me so long to add another post, I know everyone has been waiting for an update, best to assume that no news is good news=).  Max's scan came back good, there were some suspicious spots in the lower lobe of his lung above the original tumor, but not enough to determine that the cancer has spread.  The oncologist discussed the findings with the radiologists and determined that we would just watch it to see if it changed at his next scan.  It could also be shadows where Max may not have taken a deep enough breath or scarring from the surgery, etc.  Needless to say we are not concerned.  We also decided that now was the time to cut his steroid dose in half, this is a critical turning point in his treatment, we are watching very closely to make sure we doesn't exhibit any additional symptoms or relapses.  The clinical trial requires that the symptoms have to progress over 3 days before we can disucss backing out of the study or getting permission to change the doses.

He did really well in this round of chemo, still a long day, but we got a really helpful and attentive nurse, I was a little better prepared this time and it paid off, Max received a higher dose of chemo on this round and got more nausea medicine, which made him a little more sleepy and we got him to take a nice nap. 

We have so appreciated all the volunteers that help make going to the hospital a fun thing. One of the highlights of Max's day was his visit with the "Singin Chaplain", he shares his ministry with sick kids at Children's hospitals on Mondays, we have enjoyed his songs and visits to our hospital room over the months.  Max had a great time tapping his foot and dancing along with his music today, Kelly also gave us a second cd to add to our collection.  You can view more about his ministry at his website and read his touching story at: http://www.chaplainkelly.com/ and hear his story and interviews with komo 4 and king 5.

Dancing and Singing with Chaplain Kelly