Wednesday, December 16, 2009

A Little News From Stanford

I spoke with Stanford yesterday, but I don't have a lot of news.


Dr. Rosenthal did not present Mason's case at Friday's meeting! Darn!

His nurse told me that she believes he still wants to gather a little more research and information before he presents his case and opens it up for discussion with the Stanford Board of Cardiac Transplants (including the surgeons who would perform the transplant). His nurse told me that Dr. R is highly respected by the other transplant physicians and the surgeons, who almost always agree with his opinion, so he wants to be well prepared to get them on board with Mason's case.

Mason's pulmonary vein stenosis that has developed over the last two years (not knowing exactly when it began.....unknown to our dr.'s and surgeons) in combination with his HLHS and heart failure is VERY RARE! Dr. R in his 15 years of experience specifically in pediatric heart failure has NEVER seen this before! Dr Shaddy from CHOP with 26 years of pediatric cardiac experience has only seen this twice. Although they both feel hopeful about doing a heart transplant to his one healthy lung, honestly......this does create many fears and worries for us!!!! I'm nervous, but anxious to hear Stanford's final offer for Mason.

My hope right now is to hear Stanford's views from their discussion before Christmas, because the wait is difficult for me!!! Dr. Rosenthal does plan to present him this Friday. Otherwise it would be at least 3 weeks, until after the holidays, that he would present Mason's case!

Here is a little news:
As for his antibody blood tests that were taken at Stanford, I do have the results.
The IgG test (similar to the one Primary did) showed Class I at 0% and Class II at 91% (which was slightly lower than the 98% found in his test at Primary's) What you really want is to have both classes below 50% for this test. The CIQ test that only Stanford performs shows how many of Mason's antibodies are against the most popular antigens ("bad guys" for a transplant patient, which increase risk of rejection) in the population. His class I are O% but his class II are 45%. In class II he has 2 very popular antibodies. This means 45% of the population have these certain antigens! This is not good, but could also be worse. This would decrease his donor pool.

What does Stanford do about results like Mason's?
They do IVIG treatments, with are IV infusions of Immonoglobulin which are meant to get rid of these bad antibodies (well, "bad" for a transplant patient). The infusions are a 1 day (about 10 hours) outpatient treatment done every 30 days until those %'s come down significantly. Usually they see great results after 1 or two treatments. If we do decide it is the best decision for Mason to list for a heart a Stanford he will need these treatments before he is listed. I'm waiting for Dr. R's answer to my question, "could Mason have these IVIG treatments at Stanford?" Hopefully the answer will be "yes"!

On a side note........

I have people ask me all the time, "How are you?" and usually my answer is, "I'm okay, just taking one day at time". Or sometimes if I don't want to open a discussion at all I say, "I'm good thanks and you?". Last week I had a friend e-mail me and said "she keeps updated on Mason via the blog, but how are you?" This time I gave a truly honest answer:

"As for me. How am I? It just depends on the day. Honestly since Sept 3rd, every day more with Mason I think I tend to slip into denial that he is so critical and that I need to appreciate and cherish EVERY MINUTE with him, because he looks SOOO GOOD I sometimes forget the prognosis he was given "that devastating day" in Sept!! But some days it hits me like a ton of bricks and I cry the whole day...spending every minute, that my other kids are at school, holding him, and letting all my housework pile up! Right now I'm holding onto HOPE & FAITH that there is A PLAN FOR MASON and that I will know which path to lead him down!"

Thank you for asking! All of you! Some days I feel like being honest about my emotions but other days it's too hard to talk about it. But thank you for your cares and concerns.

As Christmas is only 9 days a way, I'm trying very hard not to get caught up in "holiday stress", but to remember that "First Christmas Gift".....the loving gift of our Heavenly Father who give us his Son. That gift is an amazing example of a parent's love for all His children. I want to show and express that same love to my children and help them learn "The True Meaning of Christmas". I also want to cherish each minute of this holiday season with Mason and our family, for what this next year will bring is quite unknown to us!

"Happy Holidays" to you and your families!


cici said...

Thank you for opening up. Your posts mean alot to me and I know many others. Although I have never met Mason, his little face lights up my computer screen. He has the face of a very special child.
As you hold him closely, I hope you feel God's arms around you.
I know he is watching over Mason and has a loving plan.
I always feel at peace when I pray for your sweet boy.
Have a Peaceful wonderful Holiday Season!

The G Fam said...

We will pray that your family will hear results before Christmas. I will say this, from having our two angels and now Collin: I will always try to live each day like it could be the last, especially the Holidays. It may seem silly, but Life is WAY to unsure. I pray you can have the peace. Snuggling with the babies is the best. I do not blame you for wanting to spend your days doing so!

Mindi D said...

Well said. All of it. Merry Christmas to you as well!! Hang in there :)

Jennifer said...

Hi! I have commented before...but mostly I am a silent fan of Mason's! I don't have a child with a heart disease (although my life has been touched by friends who do). I sometimes wonder why I follow so many kids who have life threatening conditions. I think I know why a little of the reason "why". No matter if our child is born perfectly healthy or not, they are on loan to us from our Heavenly Father. They are here not only to gain a physical body, but to be a lesson to us. As a mom of healthy kids, it is easy for me to ignore/try not to think about the fact that my child could be taken from me at any moment. It's a worst fear. Then I read the blogs of you moms that are living that fear...and I mean really living, learning, loving and caring for others and looking outside of yourself in a way that I think I could never do. It leaves me in awe....and keeping up with those special kids and families makes it ever present in my mind that my kids are not just mine but His. I like to think it makes me a better mom than I would be otherwise. So...thank you for blogging.

I pray for the best for Mason...and I really hope you get some answers from Stanford soon....good hopeful ones!

Rachel Lund said...

Merry Christmas Strickland family. May you find peace and joy this Christmas Season knowing that our Savior lives and that He loves you and us all!