Sunday, February 23, 2014

Long time...but LONG post... Prayers continue to be needed!

From William:
 One of the things my diagnosis has changed in me is that it has added an appreciation for the time I have and the people around me, especially those who keep reading and taking an interest in my life, family, and story.

Before Christmas, probably as early as the beginning of last summer, Eda started talking to me about having a playhouse for the kids in the backyard.  I didn’t particularly like the idea because of the space it would take and the havoc it would wreak on the yard.  But her whole impression of the place she had as a kid was a magical wonderland that brought back memories of the best times of her life.
It was something her Dad put together for her, and she spent time out there with her sister.  That finally got me thinking back to my own childhood.  In our backyard, my Dad built a swingset for us.  And I had the same basic thoughts.  No one would look at the fancy plastic jungle gyms of today and put them on par with that simple swingset.  But he built it, and it was solid, and it was fun.  And I thought it was cool not because of the way it looked, but because he made it.  I bet my little brother remembers it every day, because he has a scar on his chin from where one of the swings cut it open.

So I finally came around to the idea.  Not to the idea of buying one, but the idea of building one.  And I hope that in years to come they’ll have fantastic memories of the house as well.  And not to be negative, but I hope they enjoy it whether I’m here or not.  I’m certainly no construction expert, and this proves it, but I’ve put a lot of work into it, and it’s finally starting to come together.

Its base is a plywood square eight feet on each side, and it’s about ten feet tall at its peak.  I roofed it, and I walled the exterior with hardi-plank.  Abigail calls it “party plank,” and I don’t have the heart or desire to correct her.  She also told me a couple weeks ago, “Daddy, when Mommy leaves, it’s party time.”  I plead the fifth.

I got an unbelievable deal on windows at Lowe’s, so I put four of those in as well.  I have quite a bit left to do, but it’s standing, and its final shape is pretty much set.  The inside has plywood walls, and we’ll paint them too before all is said and done.  I hope they talk about it years from now, and I hope those stories are good ones. 

I had intended to finish this post earlier in the week and ask for prayers that the MRI came back clean.  That was close to the truth, but not exactly.  There was a tiny spot, two to three millimeters, just outside the cavity where the tumor was removed.  We don’t know what it is, and hopefully it will end up being something other than regrowth or new tumor.  The doctor does not know what it is at this point.

I don’t know what to think.  I don’t know enough or have enough experience with tumors or cancer or radiation effects to say, “Oh, it’s nothing.  It’s necrosis, and it will be gone by the time of the next MRI.”  I also can’t say, “It probably IS the start of a new tumor.”  I DO know it’s not big enough to show the tissue displacement typical of a tumor.  This has started a mental battle in my head.  I try not to worry, because I know that helps nothing.  On the other hand, it’s basic human nature to be concerned about something potentially life-threatening.  I’ll try to stay positive, but my general lack of patience is going to make this next two months nerve-wracking.  Up until this point, I have been able to realize that I'm doing well every day, and ignoring the severity of the disease is not too difficult.  Even though we do not know that this is definitively a regrowth, it brings back all the concern associated with it.  It's really difficult to accept not being there for my family and realizing that no matter how much I love them or work toward a different outcome, it just might not be under my control.

From Eda:
Apologies for not writing something sooner. Life happened, I found other things on my brain, and I forgot to update.  I didn't realize how long it has been.  I will try to do better.  Wanted to first say how appreciative I am for all of you continuing to follow our story and pray for William.  Also, thank you to so many who have stayed in touch and who have checked on us and have blessed us.  We have been so appreciative for both those who know us and hardly know us who have continued to bless us through prayers but also through some financial assistance as well.  Sometimes I worry that people have forgotten about this "nightmare" that we are still living through, but then I get an occasional card in the mail saying someone is thinking about us, praying for us, a meal brought to the house unexpectedly, a gift-card for a meal mailed, or a check to help out with bills. All these things serve as reminders that we are not forgotten and that God will continue to provide for our family through his servants and angels as those have done.  Thank you! We appreciate you and are thankful for these blessings.  But for me, it means so much just to know I still have people who care surrounding my family and who will be here throughout this whole journey, not just in the beginning or when things are really hard.

BIG NEWS since last post - William was able to start driving on January 25!  What a big day it was.  Charlotte and I decorated his car and filled it with almost 175 balloons.  We decorated the garage and made a big deal out of it.  Abigail and I made racing day cupcakes as well!  We are excited to have daddy driving again and for him his "freedom back."  This day marked 6 months since his surgery!

William's work on the playhouse for the girls is coming along, and I am so proud of him that through his rounds of chemo thus far he has willingness to overcome adversity and close on completion of this project for the girls.  The girls don't even yet fully understand how lucky they are and what a wonderful daddy they have.  Without him, there would be no one to be silly with them, because that is definitely his specialty.  Love watching the girls light up when William comes in from work. Makes my heart sing.  

This last MRI while we are thrilled and so thankful to God that his original tumor cavity hasn't had any new changes, but we were deflated to learn of a new spot that is present on his MRI that was not found in the previous MRI.  It is currently small, like William mentioned above, but just makes my heart sink.  This is the hard part about cancer.  It seems like with each scan we are never prepared to learn that a tumor maybe is back.  So I hope and pray that this is just a spot that will be gone in the next MRI in mid-April.  This is the hard part: the waiting, the unknown, and the lack of reassurance that sucks and is real.  I have to put my faith in God and try to live in the trust, knowing He will take care of us.  Please keep us in your prayers, as I am scared, nervous, and  overwhelmed that the scan was not completely clean.  I have cried with worry, but tomorrow is a new day and I am trying to remember to live in the present because, "we only have today, for sure anyways and we need to make the most of it!"

Lastly, wanted to mention there is a fun walk/run coming up called Run For the Rose that is a brain tumor research fundraising walk on March 30, 2014.  Please consider donating to Team William or coming out for the walk wearing your Team William shirt if you have one or just to join the Team William group.  All the proceeds go specifically to brain tumor research at MD Anderson and that besides prayers is what we need most.  A cure!  Please come out and show William how much he is still loved and surrounded by support if you can.  If you can join us please sign up under Team William and if not and want to donate also donate under Team William (proceeds all go to Brain Cancer Research at MD Anderson!).  Details here:  http://runfortherose.com/ 

So please keep us in your thoughts and prayers.

Specific Prayer Requests:
  1. Prayers that this chemotherapy round, starting Monday February 24 is manageable with minimal side effects, and effective at destroying the cancer in William’s brain.
  2. We continue to focus on today and the time we have with each other, not worrying about what the future may/may not bring
  3. Prayers that we do not ever have to feel forgotten about during this journey
  4. Prayers to "Not Be Afraid" and "Be Positive!"
  5. Prayers that the MRI in Mid-April will reveal an absence of the area of concern (spot) below previous tumor area and no tumor re-growth
  6. Prayers of thanksgiving that William's previous tumor cavity/remaining cells have remained unchanged health.
  7. Prayers of thanksgiving that William is still able to work on this playhouse for the girls and have his motor function to give them this gift and that he is able to finish it. 
  8. Prayers of Thanksgiving to those who have been here for us!
Audrey and Abigail being Daddy's little princesses

Abigail and Mommy

William getting his car keys back and being surprised by his racing cupcakes at 6 months since diagnosis

William and his girls!

His car the day before he got to drive!  Thanks Charlotte for helping decorate!
More car decorations!



Celebrate return to driving day!

Girls jumping!

Friend's family got a Zebra!  Girls and daddy enjoying the zebra!  Making memories!

Still fighting this!

Older Bat Girl stomping out the bad!

Girls on Valentine's day!

Spending time at the Park

Abigail and Daddy!

Mommy and the girls!

Daddy and his girls

Family Picture minus the dog

Latest project with Charlotte and those who support Team William!

Close up of some hearts!


Every scan - Charlotte Eccles comes up with some creative way of showing William that he is not in this alone and that people are rallying with prayers, encouraging words, and blessings.  This one was here when he came home from his scan this time.  Stay tuned for next MRI's creative surprise...


Below are pictures of the house coming along... more to come...but still a work in progress..... update when finished!