Freedom Waters Foundation

 We had an abnormal weekend.  We traveled to Bloomington Friday night to stay in the Four Winds Inn and Marina.  Saturday, we were taken out on Lake Monroe for a two-hour boat ride and then returned to live music and a BBQ luncheon.  This organization comes out of FL once a year to do this FREE event for veterans and children with special needs and their families. All of the boat rides are given by volunteers that offer their boats, time and resources.   I had never heard of it before and hoped it would be a fun opportunity for Lillian.  How did it go...well, first and foremost, it was HOT.  I'd have to say that was the only real downside.  

We actually rode in a boat with just the captain and his first mate and us.  It was beautiful.  Lillian was very nervous and actually started to cry mid ride.  We didn't make it a full two hours on the lake, but pretty darn close.  I think she enjoyed herself, but her nerves got the best of her.  She gave the boat captain 2 thumbs down when has asked her if she liked it.  I am OVERWHELMED with gratitude by the number of people, volunteers (including the restaurant that served pork bbq, hamburgers with all the fixings, cookies, cole slaw, baked beans, mac and cheese.) There was also live music which takes me back to my childhood when my grandpa and uncles would sit around and "pick and grin".  

As we were boating, the lovely co-captain shared with me that she was recently diagnosed with cancer.  As she shared her story, I was realizing that God put us in this boat for this very reason.  We had a brief chat and now I get to pray for her and her family on her journey.  We, technically, should have been on the Sunday event but got moved to Saturday. Saturday night, there was a huge, dangerous storm that came through and damaged boats, docks, and trees.  I'm not sure if they were even able to host the event Sunday.  But God.  He protected us from what might have been a very traumatic event. (We stayed the night before in the marina inn) Such a blessed outing.  The gratitude I have is overwhelming.

I also got the chance to meet up with a longtime friend that I came to know thru Lillian's early days of therapy.  She and I stay connected through Facebook and she donated a tote full of tools and various other crafting supplies to me.  More and more blessings.  I'm constantly blessed and humbled by the love and generosity I (and our family) continually experience.  

I finish with pictures from our day.

How's the adult infusion center experience going you ask...

 Not great.  Not great. She's been to 3 and we have experienced the same nurse.  In all my years working in healthcare, I can't even think of a nurse who ever behaved in front of a patient this way.  She curses, she's always at a 10.  She's never mean to Lillian so to say, but this last time was all I could take.  Admittedly, I have been in a hard place these last 6 months, surgery, chemo...maybe I'm just tired, but I just can't even think of dealing with her again. So, we saw GI for follow up and we are switching locations.  Please pray this is a better experience.  If you know me, you know I do NOT enjoy all this upheaval with new doctors and locations and such...AND even though she is 18, she's not an adult. It's just inappropriate, this nurse even refers to herself as the inappropriate nurse and she thinks it's funny.  Well, I just don't think she really cares.  What really gets me is I think she's just bitter and sad, and that's sad.  I also get annoyed when they miss her veins or blow them which is usually what happens and they blame it on her.  "she's dehydrated" "caffeine is bad" Lillian gets the same diet, fluids, nutrition every day around the clock.  Also, I mistakenly grabbed the wrong extension tube for her meds and they had no means of giving them, so most of it wound up on her clothes and then the nurse asks me when do I want to start her infusion???? HELLO.  So, that was her July 3 infusion.

She did start receiving SSI at the end of May.  Much sooner than we expected.  She also got accepted to the bigger waiver which we are still hanging in limbo for.  She has had appointments with GI, Pulmonary, Gynecology recently.  All went fine, Her cycles have been controlled since January, but of course she has one days after we see the Gyno.  UGH. 

I am delighted to be finished with chemo.  My blood marker is normal and will start getting scans every 6 months for a couple years. (and blood work)  I did get a kidney infection after my last chemo and it was rough.  He said that is kind of common for people after chemo ends.  My symptoms were so much worse with the last treatment and lasted much longer.  He said that is typically with the drugs I was on.  I am starting the feel much more normal.  I still have chemo brain...it is real.  I can't believe it is August and school has started.  Pray for Ezekiel, he started in a brand new school.  He says it's good and even though I know it was the Lord's leading, I felt bad for him not being with kids he's known his whole school life.  We didn't move so I know those friendships will remain.  

Sorry for the long gap in updating, but chemo.  I think that's all I need to say.  Thank you for your prayers, love and support.  The journey continues. <3