Monday, January 6, 2014

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!



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