Free

We went for results yesterday and got the answer we so desperately wanted to hear.... No Tumors!!!!! We were soooooooooooooooo excited!!! Nothing lit up on the pet scan!! His kidney function is still really elevated and the Dr. Said it was serious that we get that down.  We don't want Bennie to go into kidney failure, so it seems like a great time to let his kidneys heal.  Since Bennie doesn't have any tumors right now they are taking him off his medicine completely for 3 months....or until the next pet scan or until Bennie feels anything abnormal.  All this is scary, but we feel completely and totally blessed that we have this luxury and time to let his kidneys heal!! The worst case would have been going in to find out tumors are growing, and not be able to do treatment because of his kidney situation.  So.... If anything does appear in the near future  hopefully his kidneys will be A ok and we can start a clinical trial or do zelboraf again!  But the good news is we have options right now and he has no tumors!!!  And he won't be on any medicine..... So he will feel good!! Thank you so much for all your prayers, and we are just praising Jesus for this great news!!! It feels amazing to have all that anxiety and worry lifted off your shoulders !!! We can breathe!!!!!! We can eat and sleep again!!  We can enjoy every moment we have right now!!

Scanxiety

Well, its scanxiety time!! That's what we call the anxiety that comes with upcoming scans!! The feeling is horrific.  Let me give you a little glimpse of what it is like coming in for scans.  First, you drive up to this hospital and cringe.  We are back... back to this place that is very last place on the places I would ever want to go to.  UGH!!! Then we go to the waiting room and wait!  Wait! Wait! Wait!  Inside you feel like you want to explode from anxiety.  Then the coffee lady volunteers come in, and offer coffee to all the fellow patrons who are all freaking out on the inside.  Hoards of people go in for the coffee....but not me.  I keep waiting.  I wait for the Xanax and Vodka cart to come by so that my anxiety can be relieved, but it never comes!!  Just kidding....but it would be nice to be sedated until tomorrow afternoon when they deliver results.  Then all the anxious people inhale their caffeine, and that anxious energy is quadrupled.  People start yapping about their ailments, and how horrible of a time they are having.  The people in the waiting rooms are very nice and caring, and can directly relate to what you are going through.  You listen to about 30 conversations at once, and think to yourself how we even got to this point!! We are typically the youngest couple, and get multiple stares from people thinking the same thing.... WHAT ARE THEY DOING HERE!!!!!!!!!  Then Bennie goes back for his scans, and I try and do something on my laptop but usually its unproductive because I can't think straight like right now!!! Then we leave, and we go home and try and occupy our time and thoughts with something other than what the impending results will be. 

The next day we go back for results.  This visit is typically worse anxiety than the day before.  We continue waiting until someone comes into the room and delivers whatever news!  I am praying so hard right now  that everything is still alright.    But it is the first scan he's had since being on the decreased dosage for over 2 months.... so obviously we are scared.   I will let everyone know tomorrow what the news is..............

Protect the Skin You Are In

One of the many questions that people ask Bennie and me is what sunscreen we use since being diagnosed with Stage 4 Melanoma.  I was going to make a list of some websites and links for what we have seen first hand that has worked (and we have tried a ton of products!)

We both learned of this sunscreen through a fellow blogger whose husband has stage 4 melanoma as well!  Her husband also goes to MD Anderson, and I've looked to her as the one of my most helpful mentors through this whole battle: www.martinfamilyjourney.blogspot.com

Anyhow... the sunscreen is www.bluelizard.net
We used it the entire time we were in Hawaii this spring, and none of our family members were sunburned!! It is a little pricier than other sunscreens, but it is great for sensitive skin and they even have a version to use for babies.  It is super thick, and we have found that it offers the best protection!!  You can order it through their website, or amazon as well.  I heard through the grapevine that Target was trying to carry it in their stores, but I haven't seen it there.  I should know since I am there every other day!!


One sunscreen not to get is the aerosol cans.  They are definitely really easy to use, especially for toddlers on the run, but it doesn't get consistent coverage.  Also, our Dr.'s have said they aren't sure what the inhalation of those fumes could do to little lungs.  So... even though it's easy....better safe than sorry!  Once you make sunscreen a part of your daily routine then your little one won't care too much they are getting slathered down with goop!

In addition to sunscreen Bennie also wears SPF clothing daily as well.  We have also purchased special  shirts and hats for all of us for when we will be in the sun all day!  Here are a couple links to check out for sun protection clothing:

www.columbia.com
www.coolibar.com
www.rei.com
www.outdoorresearch.com

Those are a few of the stores that we frequent!  I was having a talk with someone about how they hated that they were so pale..... but I reminded her its better to be pale and have skin that doesn't age than to be tan and have a scar on your left arm that looks like a great white shark took a chunk out of!!

End of Summer!

Here is Bennie and I at his last appointment at MD Anderson.  We had to wait for two hours in the room.. so we got a little bored.

The appointment went as expected... Which is rare.  His kidneys are still about the same, so he is still doing the same thing he has for the last month or so.  They also said that in 2 weeks he will be getting a PET scan instead of his normal ct scans he gets.  They don't want to risk damaging his kidneys anymore with the dye and the PET scan is supposed to be less toxic.  This will be his first full body pet scan, and that is a little scary because we will be taking a look at areas we haven't before. But, we are praying everything is still the same as last time!!!!!

We are still enjoying our summer!!!  Even though the kids started school this week, we got away this weekend for Labor Day.  We just went to the Space Center and Kemah for the day with MiMi and Pops.... And we all had fun!