Prayers answered and relief experienced for now....

What a relief.  I’ll just start it out that way, like an episode of your favorite serial drama with the end at the beginning.  If you’re at all like me, you’ll like the ending.

Let’s rewind to the post just below this one for a minute.  When last we left you, there was an area of concern.  There was a new spot on the MRI that we had never seen, and even though the doctor told us at this stage that he wasn't worried too much yet, that he was only telling us because it was his job to be diligent, we worried.  I’ll just defend myself by saying this.  If there’s something growing in your head, and you don’t know what it is, you worry.

So Sunday comes along, March 23, and I start off to the medical center for the MRI, which was a month earlier than anticipated.  I had spent a month dealing with concern about it, so I didn't have a whole lot more worry to expend.  When I first began treatment, I told everyone that I would at least make it through the first year without any recurrence.  I'm happy to say that is still the case.

I don't know what the spot is.  It could be tumor cells, or it could be scar tissue, or it could be something generated from radiation.  To be honest, at this point, I don't really care.  It's either staying the same or shrinking, and tumors that don't grow don't kill you.  My uneducated view was that whatever it is had dissipated a bit.  It looked less solid than last time, and it wasn't as well defined.  So two months from now I'll get another look at it, and we'll pray things are going in the same direction.

It was a special surprise to come to the house and see so many people had become creative to show support through the last Team William project.  There was silliness, serious support, happiness, and many other emotions in people's pictures.  There were a few in particular that were very inventive, and it meant a lot to me that people would take time and energy to use their energy that way.  I got people's best, and it's hard to think I deserve it.

I have just finished round 6 of chemotherapy and although it wasn't easy and I was tired and nauseous I made it through.  Thanks for all of your continued love and support for me and my family during this journey.  You have no idea how much it means to have so many people who pray, send cards, send texts, check in on us, and rally behind us.  Your unwavering support is helping me continue to be successful in this journey.  Please do not stop.  

I will try to be more diligent in updating this blog quicker after the results.  I have had a lot on my shoulders and chemo wiped me this last time.  Eda usually is diligent and take care of most of this, but life has happened and her private therapy business is under an audit.  So to say she is busy and overwhelmed is an understatement.  We will work better to keep you all more informed, just please stay behind us.  We can't do this without you!

Lastly, thank you for all those who came out and supported my family and brain tumor research at the Run for the Rose.  We had a lot of fun and hope to make it a yearly event to help find a cure for my tumor others suffering with brain tumors.  

I continue to work on the playhouse for the girls and I will keep you posted when it is finished.

Specific Prayer Requests:

1. We continue to live in the moment and enjoy the time we have with each other, not worrying about what the future may/may not bring
2. Prayers that we continue to have the support and help of others along this journey
3. Prayers that I continue to experience God's healing power and that my brain continues to show no tumor re-growth
4. Prayers of thanksgiving that my last MRI showed change in a positive direction and that Eda and I are able to rest easier knowing I am experiencing healing.
5. Prayers of thanksgiving to those who have continued to be here for us and participate in the surprises for me along the way.
6. For the next round of chemo that will start in late April.

Team William Project - pictures with love and encouraging words!

William looking at each picture!  Thanks for all those who participated!  Huge Success!

William and his girls!

Audrey getting ready to "walk" the Run for the Rose for daddy!

Abigail, Addison, and Caroline Eccles sporting Team William attire at the walk while sitting in the "circle of Willis" of a huge blow up brain!

William and I after the walk!

William and his friend Jeff who also has a brain tumor like William.  Jeff's family has been a huge help to our family as we learn about this tumor.  Amazing new friend to William!

Abigail at Team William walk supporting her gray cancer ribbon for her Daddy!

Abigail and Daddy!

They walked over 2 miles before requesting to be in a stroller.  So proud of them!

Family after Run for the Rose!

Thanks to all who walked with us!  You are awesome!

William and I

Passed out on her daddy!

Upcoming MRI - prayers.... please...

Short update: William's MDs decided about 2.5 weeks ago to do an MRI sooner for William to take a look at the new spot they saw on previous MRI.  So we will be going to have an MRI this Sunday, March 23 and will receive results in late afternoon on Monday, March 24.  Please keep William in your prayers and our family that we may receive peace from our concerns and anxiety.  Thank you so very much!  We hope this post finds each of you well. 

Specific ways to pray for us:
1. Prayers that William's MRI goes well and the quality and images are what they need to be to help the MDs to know what is going on
2. Prayers that the spot is no longer there and or hasn't changed any
3. Prayers of Thanksgiving that we may know a little more now rather than waiting and wondering. 

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!

Update - Merry Christmas and Happy New Year (written by Eda Lewis)

It feels like forever since I last updated everyone with a “real” update.  So will do my best.  Audrey has turned one since we last wrote a blog, and that was a celebration and an emotional one at that.  She seemed to turn one overnight because of how fast the last five months have gone by.  If the situation were less overwhelming, we think we may have been able to enjoy this irreplaceable time more.

Prior to William’s scan, Charlotte surprised us with the chain links of positive encouraging words, scriptures, and quotes that so many of you worked on and got to Charlotte to surprise us with by putting them on our Christmas tree.  As per below in the picture you can see we were literally “wrapped” in your love and support as we waited to have William’s scan.  Thank you so much to all those who participated.  We feel so honored to have each of you in our lives, continuing to show us that the support still exists.

William and I were anxious about the scan we had Sunday, December 22, 2013.  Before William’s scan he asked me to give him reassurance that the scan would be “clean and okay?”  “Of course!” I replied.  “It will be fine” and prayed my game face was enough to keep him positive.  Even though deep down you are always worried it may not be this time but I was pretty confident it would be.  So after a day spent with the girls we went back to MD Anderson the next day and were thrilled to hear the news on Monday, December 23, 2013 that the tumor was stable and thus far the chemo and radiation were doing their job to keep it that way.  The MD said, “William’s brain continues to move and shift back into a better position since the surgery.”  He felt that William was doing very well and was impressed with how the two of us continue to handle all of this.  It was so nice to hear the MD confirm this, because we really are trying.  I mean it is tough, but we are doing the best we can to keep moving forwards and staying as positive as possible, although we both will admit it is not always the way we feel.  We are only human right?  Anyways, but the MD confirming and spending time with us on this made me feel like he really cared about “us” and we were not just another patient.  After waiting a little over 3.5 hours for the pharmacy at MD Anderson to fill his chemo medications we were on our way home to celebrate the news with the girls and try and enjoy some of our Christmas holiday and that we did!  We had anticipated so much and knew that the scan would make our Christmas what it would be – We are so blessed and thankful it was a wonderful one! . 

Dr. Gilbert, his neuro-oncologist said, “You know if you look back about 6 months ago and thought you would be sitting here in my office today dealing with a brain tumor diagnosis, you would have thought, ‘No way!’.  This has really put a change in your lives, and that isn’t easy.”  Everyone else’s life around you continues to move forwards and while ours does as well, we continue to live this “nightmare” diagnosis.  It doesn’t just go away; we just choose most days to not allow it to invade our concerns. 

Christmas was extra special this year.  I really tried to enjoy and soak up every minute of it.  I took more pictures and watched William interact so much with the girls, which wasn’t anything new, but I just treasured the moments a little more.

Christmas passed faster this year and maybe because of the scan it affected us, but the New Year fast approached.   We were able to reflect on the blessings that have been presented to us this year including having realized how many people care about us and are here to support us while William continues to beat this!  We are so appreciative and can’t ever put into words how much each of you no matter how great or small has helped us in some way and gave us the encouragement to hold our heads up and keep going.  We are grateful.  We do not look back on 2013 with sadness even though it was a rough year with Audrey being born blind and not gaining any sight until she was 5 months old, or William’s brain diagnosis, but one that has offered us insight and taught us how much we are loved, cared about, and how we need to enjoy every minute instead of just going through life as a routine and letting it fly by.   I was specifically blessed in 2013 with much strength from God to handle all of this and keep ‘trucking’ my way through as a wife, mother, physical therapist, and as a caregiver.  We have learned to appreciate each other more and say, “thank you” to each other.  Reflecting on 2013 has made me realize quality time has never meant so much.  We are also so blessed by so many of you who have helped contribute through food, gift cards, words of encouragement, donations both through the website and the benefit.  These have all really helped us out so much along the way with medical expenses and offsetting some of the burdens of cooking and financial stress as well as keeping our spirits lifted.

William started his next round of chemo on Monday, December 30, 2013.  So far he has been fatigued and nauseous only.  Please keep him in your prayers that his nausea stays at bay and that his energy levels don’t get knocked too low.  Pray too that he stays well as for 2.5 weeks he was sick with a hacking cough that did not allow for much rest.  We don’t want him to catch anything else during this cold and flu season. 

As I write this tonight, I want you each to realize how much I appreciate you and am thankful to you all and to God.  I want to reiterate how proud I am of my husband.  I cannot tell you how much I admire his stamina, his ability to stay headstrong and focused on beating this, his energy to make time for each of us every day, his ability to keep a smile on his face almost all the time despite not feeling well or being worried about the next step, his ability to teach the girls and show them what a father should be like.  I am proud of him and so fortunate to have him as my husband.  I pray to God each night that he allows me to continue sharing more special times with him and that I am blessed with many minutes, days, hours, and years with the man I married.  I am so lucky.  Our anniversary is coming up on January 8, and I feel like I am so privileged to have known William since I was 15 and honored to have been his wife for almost 9 (so far J).  William is my hero, how he does it I don’t know.  I know I couldn’t handle what he is, being the caregiver is hard enough, and it isn’t anything compared to what he has to do. 

The Lewis Family hopes that you all had a wonderful Christmas, Holiday Season, and a blessed New Year and that 2014 brings us all a better year than the last!

Specific Prayer Requests:

1. The rest of this round of chemotherapy is manageable with minimal side effects, and effective at destroying the cancer in William’s brain.
2. We continue to focus on what’s truly important—the quality time we have with each other.
3. Prayers for a GREAT 2014!
4. Prayers that the scan in February will continue to be clean and stable!
5. Prayers of thanksgiving for the good news in December and the current state of William’s health.

   

   Audrey 1 year old - compliments of Ashley Grimmer Photography

   
   

   

   Audrey Checking out the moose!

   
   

   

   Audrey at Nan's house

   
   

   

   Having fun on the horse at her Nan's

   
   

   

   Wrapped in the chain link - thank you!

   
   

   

   Wrapped in your love!

   
   

   

   Making Christmas Cookies with Aunt Bree and our neighbor Michelle in Team William shirt - day of his scan!

   
   

   

   Yummy Cookies with Aunt Bree and Abigail

   
   

   

   Christmas Eve dinner with Lewis family

   
   

   

   Christmas Week at Michelle's house (neighbor)

   
   

   

   Chairs they received for Xmas - Thank you!

   
   

   

   Best family pic we could get 2013

   
   
   
   
   

   

   Thanks for the pajamas - Ashley Grimmer!

   
   

   

   These Superhero dolls came from my college roommate - Danielle Gain McCoy for the girls for Christmas!  WE are all still fighting this one!  Thanks for the spirit gifts and the love!