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!

   
   
   
   
   
   

Prayers are appreciated....

Sorry for taking so long to post.  Things have been so incredibly busy with the holidays and William's treatments as well as both girls and myself being ill in addition to Thanksgiving and preparation for Christmas.  This blog post will be incredibly short, but just want to bring all those who have been praying and keeping us in their thoughts up to speed.

So William had his third round of chemo the first week of December.  It drained him a little more than the last as it was a higher amount than previous months.  He did great and I continue to be amazed by his grace and poise as he fights this cancer.  He got sick near the end of the treatments as to be expected, but other than fatigue at the beginning was good.  He currently is fighting a cold which is a little harder on him due to the chemo his counts are lower, but again, he never complains.  Just a trooper!  He does far better than I am with all of this.  We are all nervous and a bit on edge regarding the MRI scan William will have to assess the brain and look for any new lesions and check on the stability of the remaining one on Sunday in the afternoon.  We then will get the results from his neuro-oncologist on Monday, December 23, 2013 in the late morning/mid afternoon time.  I promise to keep everyone posted on facebook and will work on a blog when I have a moment that night.  So check back, but with that I would like to request a few prayers and will update more after the next scan.

Specific Prayer Requests:

1. Sunday's MRI is uneventful and the results on Monday are for are a stable tumor with nothing new to report so as to allow us to have a very Merry Christmas
2. That the next round of chemotherapy is manageable and effective. 
3. William will recover from this cold and it will not get him too far under.
4. As we enter into the Christmas week we continue on the positive things that 2013 has brought our way and our appreciation of time spent with family and friends despite this obstacle.
5. Give thanks for all of our continued love, prayers, and support from so many of you
6. Prayers for patience for William and I both. Since we are both stressed we are requesting prayers to help control our anger with the girls when they stir even the smallest bit of trouble
7. Continued prayers of thanks to all those who have been blessing and continue to bless my family with donations, letters, and mass cards.  We are truly grateful! 
8. Prayers for a less stressful and eventful 2014!

Swinging in the backyard

Notre Dame Football game

So cold!!!!!

Lighting prayer candles for Daddy at Notre Dame University!

More to come on this project... stay tuned!

Audrey turned 1

Classic Santa picture makes me laugh

Audrey started walking on her first birthday - so exciting!

Audrey 1

Audrey and her sister!

Audrey at 1

Audrey at her first birthday party!

Family shot - compliments of Jay Mennel

Excited to see the cake!

First Scan

I got some good news the week before last I’d like to share, but I want to walk through the process rather than just skipping to the end.  By the end of the post, you might wish I hadn’t, but as I’m starting, it seems like a good idea.

It all started Tuesday afternoon.  I went to the hospital for my first post-treatment MRI.  I had gone through phases of nervousness during the previous week because this was a new experience, and one of the prognostic indicators was how I would respond to treatment.  If my tumor was resisting radiation and chemotherapy that would be a fairly significant problem.  But by the time I got there, I was just ready to get it out of the way.

I arrived a bit early, had my blood drawn, then walked down to the imaging center.  It was about an hour before my scan was scheduled, so I figured I would be there a while.  It turns out I didn’t have to wait long there.  Once they called me to the back, I had to sit in another waiting room, where they took away my phone, anything I had to read, etc.  They took my warmth.  This waiting room is so cold there were penguins complaining and walking out.  I don’t know how long I was back there, but I asked the staff to check for signs of frostbite since I was already at the hospital.

The actual scan was boring and uneventful.  The IV for the contrast fluid was painful and uncomfortable, but the pain was gone before I got back to the car.

The next day started off badly.  The parking lot was so full that Eda had to drive around thirty minutes to find a spot.  Halfway through, I had to leave to make sure I didn’t miss my appointment.  I got texts in the elevator telling me she wouldn’t be able to make it.  I checked in and sat down, and she finally got there just after the nurse took me back to the exam room.

Then the nerves kicked in.  I started wondering intently what the scan showed.  I couldn’t help it.  I just didn’t want to wait any longer.  Before my first day of radiation, I had said I believed everything would be fine at least until I finished the first year of chemotherapy.  But the seeds of doubt grow quickly.  I couldn’t wait to see any longer.

I answered about a hundred questions, I think.  “Any loss of vision?” “Any numbness or tingling?”  “Any falls or dizziness?”  “No, no, no!  WHAT DOES THE SCAN SAY?”  I finally got through the intern’s battery of questions and neurological screening tests as I waited to see the oncologist. “Do you have any more questions?” she asked.  “Yes, I just want to know what the results of the MRI were.”  She pulled a sheet from the top of her notes and read it to me word for word.

And the news could not have been better.  It was written in a foreign dialect that was a bit strange to me, but I had my own personal medical translator there to decode it for me.  Stable.  That’s the word I wanted to hear.  And I got it.  That was enough, but wait!  There was more!  The doctor started talking to us about the genetic makeup of the tumor and how they just had received info back regarding, and how there was a specific genetic marker that they find in a small percentage of them called IDH1.  When they look back on these compared to those without this gene, the baseline life expectancy doubles, and “almost all” the long-term survivors have the same marker.  In my estimation, that puts me in good company, and I haven’t seen my wife that ecstatic in years.  The doctor went on to say it was not a guarantee, but it didn’t matter because I heard all I needed to hear for the moment as did my wife!  We are not out of the woods and prognosis still isn’t what I expected of my life, but this news was fantastic and we are celebrating the positive – stable tumor and IDH1 being present in the tumor they removed.

We walked to the car having totally forgotten about how hard it was to park.  When I got home, my door was decorated with wonderful post it notes with words of encouragement on them.  Thank you to all of you who took time writing me notes at the benefit. 

Unfortunately, the story doesn’t end there.  I grew up having the old cliché drummed into my head.  No pain, no gain.  And that’s where the first round of high-dose chemotherapy comes in.  The first morning after taking that was brutal.  I added a second dose of anti-nausea medication, but it was too late.

The next few days, I was able to preempt it, but towards the end of the week, it hit me in the middle of the night and  stuck around until morning.  Apparently the sounds reverberated through the house.  That’s embarrassing, actually.  I don’t mind taking what it gives me, but I would rather the battle be my own.  I didn’t really mean to share it.  I realize the irony of what I’m writing here.

For anyone not familiar with my schedule, I take the medicine for a week and then get a twenty-three day reprieve for the next year unless there is a change in the MRI (but we won’t talk about that).  Then the dosage ratchets upwards again.    My next appointment is November 27th, where they will check my blood to see how the counts are doing for chemo.  My next scan will be in December.

The positive thing here is the gain.  If it takes a miserable week to get through, then I’ll handle the miserable week and get through.  I can do that, and if I’m really good, I can get through without complaining.  There are life lessons here, and I’m learning them.  And life will go on.  

Hopefully the prayers are still forthcoming and some directed prayers are listed below:

1. That the next round of chemotherapy is manageable and effective.
2.  That I find the strength to overcome the fear of the future and do my best to provide a strong example for my family.
3. As we enter into the Christmas season we are able to focus on the positive things that 2013 has brought our way and our appreciation of time spent with family and friends despite this obstacle.
4. Give thanks that I have been able to cope mentally and physically as well as I have.  I certainly could not have done it by myself.
5. Prayers of thanks that the tumor currently is stable with no new growth.
6. Prayers of thanks to all those who have been blessing and continue to bless my family with donations, letters, and mass cards.  We are truly grateful and appreciative of you all as we enter the holiday season.