Doc's Trek

Daryl was able to attend Ash Wednesday Mass this past week.  (this is a selfie)  This was the first time he had attend Mass in several months. I have been able to bring him communion weekly after Mass.  It gave him great strength to actually attend and particiape the Mass! We have been keeping pretty low profile of staying or at home due to the bad cold and flu season. That is the last thing we need!

We saw Dr. Mansfield this week. Daryl had a small “growth” right near his stoma. Dr. did a biopsy and put Daryl on some antibiotics. The MRI has suspicious area, that Dr. Mansfield was in unclear of so he scheduled a appt next day with Dr. Kossman.               Dr. Kossman showed us the MRI and he thinks it is inflammation from he previous surgery. We also spoke with Dr. Barone ( he actually called us himself!) and we will follow-up net week. Daryl is still having issues swallowing, so he relies on the g-tube for the majority of his nutrition. On Wednesday we will see Dr. Mansfield and Dr. Barone and hopefully will have a surgery date!

We also saw Dr Sandler , with is an endocrinologist. Since Daryl’s surgery removed his thyroid and parathyroids he needs to be monitored  closer and take daily meds to compensate. Dr Sandler confirmed we have  great team of doctors!  He used to work with Dr. Koossmans father. What a small world!

We had a visit this week from Mark Davis and the Lu family made another visit on Sunday! We are thankful for all of you that ask about Daryl and are keeping us in your thoughts and prayers!

Lent is a time of preparation, we are hoping all Daryl’s

preparation will lead to a successful surgery. Fingers crossed the next post we will have the surgery date!

Love Daryl and Charlotte

We were able to have Daryl’s cousin, Josh and his beautiful wife Emilie, over for dinner on Saturday. Josh and Emilie recently moved to San Antonio from the DC area and were in town for a conference. It has been a while since we saw Josh and we were thrilled to meet Emilie!  Everyone had a great time-sharing stories of the Lu and Wu family! Lets say the Lu brothers exposed Josh to some Asian traditions . . . may involve a table and some dice?

This week Daryl had a contrast MRI of his abdomen (belly) to check to make sure things are looking good! We see Dr. Mansfield this week and are hoping to have a surgery date!

Daryl is still having some challenges swallowing and some pain, but he always has that beautiful smile! We know that there is still a long road ahead, but we know it is fill with friends, family, love and prayers. Who could ask for a better road to travel on!

All our love – Daryl and Charlotte

 

 

 

Well, a sense of humor has always been part of the protocol at the Casa de Lu! We have come to realize that some of you mistakenly thought that Daryl has already had his entire esophagus removed, when in actuality it was only partially removed. The part of his esophagus removed was from the back of his tongue to about the collarbone.  The above picture are  originals drawn by Dr. Barone.  The next surgery  is to remove the esophagus in its entirety ( see picture 1) and replace it with a portion of the large intestine or bowel ( see picture 2)

We are having  some tests this week to check that his “bowel” is healthy and ready. Then we are awaiting for the date of surgery.

We were able to enjoy the Superbowl with a visit from good friends Jeff, Chris, Dan and Kelly. This crowd offers great insight and entertainment on many topics of discussion.  It was great to see Daryl smile and laughing! He even had a few Superbowl snacks!

Daryl  is getting stronger everyday! His weight is up to 132 lbs!  We are adjusting to our “new normal” of life.  Daryl has a daily routine with his “lary” laryngeal tube of cleaning and changing it; he is quite good at it!  We have not ventured out much due to the cold and flu season. That is the last thing we need! Daryl is walking on a regular basis to gain strength and going to speech therapy every couple of weeks.  We will update more once we know the outcomes of his tests and the surgery date.  

Many of you have inquired on how to help. If interested, Daryl’s fraternity brothers Jeff Chine and Chris Yurcek, and good friend Dan Lawton have set-up a GoFundMe page.  www.gofundme.com/helpdaryllu.   There is a beautiful description of our journey and we cannot thank them enough for setting this up.   Please do not feel obligated to contribute.  All the prayers and moral support have been more than enough. They keep us going everyday!

Love, Daryl and Charlotte

 

I know it has been a while since the last post, but this will explain (hopefully)

Most hospital have what is called a Tumor Review Board. This is a group of very qualified physicians from oncology, radiation, surgery, etc that review and discuss the best options for patients. It provides a multidisciplinary approach to achieve the best possible outcomes for patients.

In the first weeks of January, Daryl’s case was presented to the Head and Neck Cancer Tumor  Review Board. All of the Dr’s that have treated him and pathologist were present. They reviewed the final reports and had several discussions. In most reviews they discuss 15-20 patients, on this review the majority of the time was focused on Daryl’s case, final reports and recommendations.  Yes we, all know he is that special!

First, the tumor had clean margins in all areas except one. If you recall the tumor was a “plum” size and the expertise of Dr. Mansfield help pathology to really get an up  close and personal look! There a was one area on the lower end,  that showed cancer. The presentation of the cancer was extremely  unique. It formed a straight line that did not spread in any direction, except for two inches south on his esophagus.

This is not what we expected to hear, we were hoping for an “ALL CLEAR” but God has another plan  for us. We met with Dr. Mansfield and he explain the various options. (Five in total) I will not go into detail, but  we are very appreciative of his honesty with each option and that we did have options!

Our next step was to meet and consult with  our “posse” of doctors (Dr. Barone, Dr. Kossman, Dr. Smith) for their insights, so we could make the best decision.  We have spent time evaluating  all the options and  praying  to determine the best decision.

Daryl’s decision was to choose the best option for living a long life, which  is to have another surgery and I completed agree! This surgery will be as extensive as the previous one. He will basically have the remainder of his esophagus remove and replaced with another part of his colon. I will blog with  more details later.  This will take place in about two months to give Daryl time to get stronger.

We know this may come as a shock to most of you, as it did to us. We are focused on the future and know that this too will pass,  with prayers and continued support from  family and friends.

This  picture of Daryl was taken this weekend. He is still is having some challenges swallowing, but has gained weight and is beginning to eat more types of food! (note the smickers) How can you not love that smile!

Please keep us in your prayers!

Love Daryl and Charlotte

 

 

Happy New Year to everyone! We hope all you had a very blessed New Year and safe travels. Especially to the Knott family who traveled back to Boston in the height of the “cyclone” blizzard!

The twelve days of Christmas actually begin after Christmas leading up to the arrival of the three Wiseman or the Epiphany.  Since Daryl has been home, rather than doing the twelve days of Daryl, I thought we would focus on the arrival of the Wiseman (Magi) and their gifts

Gold: Precious and valuable

Dr. Mansfield has brought this gift. We had a follow up visit this past week  and he very pleased with Daryl’s progress and partial removed some of his staples. (no not like your staple gun at home, but similar concept). Dr. Mansfield  also brought in a few of his clinical staff to learn about Daryl’s  unique case and follow-up. For me is was interesting as he “quizzed” them on what to look for post surgery. This  brought back some memories, from my days as a nursing student at St Francis. (Teresa I know you can related!) He did show us a picture of the tumor and the painting technique he used to differentiate all the margins. This is similar to  a paint by numbers of all the margins for the pathologist, yellow is thyriod, blue- parathyroid, etc.  This a technique he learned at Stanford an was very cool.  Daryl’s  case will be presented to the Tumor Board on the 8th with input on next steps from various clinical folks. In other words, his tumor will be going to the Golden Globes (not really, but I like the award show and the analogy).  We will find out there recommendations on the 12th.

Frankincense: Whole and giving of oneself

Dr. Barone brought this gift. The continued saga of  Daryl and his feeding tube! The  tube started to leak again and giving him the “hiccup spasms. We went to see Dr. Barone who adjusted the tube and confirmed my suspicions  that the balloon has lost some air and needed to be  reinflate it. He demonstrated how to do this, so now I will be able to troubleshoot this in the future.   We did inquire to how is holiday was and he did share some  Barone family dinner traditions. He actually is the cook of two key element Christmas meal,  Prime Rib and  baked tomatoes.  The legend of his Prime Rib recipe is one he learned  while reading a magazine in a Barbershop when he was 12. The barbershop  also was  gentleman’s club. (we are not judge of where good recipes come from) Dr Barone has cooked this recipe with some “tweeks” every year for his family. Daryl is a great Prime Rib cook, as well, and I think we learned some tips! Truly giving of oneself!

Myrrh: Bitterness and suffering

Daryl has already dealt with this gift, not as Christ would, but in God’s plan. We know the suffering is getting better each day. We are not bitter but grateful that Daryl has the gift of life.

My title has from changed from Director of Communications to Secretary of Health. I arrange  for equipment pick-up, which requires a Dr’s order, speech therapy, Dr appointments, supplies and lab work.  We continue to feel extremely blessed and thankful for these gift and the gift of  prayers an love from all you! Next week we have several follow-up visits. Will update the blog  after we know more.  If any of you have photos you would like me to post on the blog, please send them to my email charlita@cox.net.

Thank you for all your prayers and support!

Love Daryl and Charlotte

 

Visits:

We have been so blessed to have visits and calls from so many family and friends. This week, John and Kristi Smale came down for the Bay area. It was great to see them and spend some quality time. John came over and  watched the USC bowl  game with Daryl and provide great commentary on stories of Daryl’s past! He did receive the coveted picture on the blog, which is well deserved! Also Jason Knott who was (pictured on the Sept 12 visit) was back in town from Boston and stopped by. The remark that most people have said is “He looks really good” I would agree!

Girlfriends:

I want to take a few minutes to thank all of my girlfriends that have been there for me. In the last few days, I have been blessed to talk with many of you on the phone. We live in different parts of the state or the country, but hearing your voices is like time has stood still. Those conversations lifted me up and warmed my heart, to know that you are always there for me and Daryl.

End of 2017:

As we are closing out on the last day of the year, 2017 has been one of the most challenging years for the Lu’s. Last year, we were looking forward to the end of the radiation treatments and to start the  2017 year fresh. Little did we know what God’s plan was for us.  It was only the beginning of the journey and the battle we would face.  We are entering into 2018 with very blessed hearts, full of love,  great thanks and appreciation to each of you, that have been on this journey with us.

The doctors did so much for Daryl, but the best medicine has been his positive attitude and support of friends and family. At times  like these, it brings to mind a key take-away (not a resolution)  to keep in better touch with family and friends. Please do not wait for something to happened, pick up the phone and reach out to someone you love and care for. There is nothing like today . . . . . .

This is one of Daryl’s favorite bible quotes of  St Paul, from Timothy 2 “I have fought the good fight, I have finished the race, I have kept the faith.”

Our race may not be finished yet, but we are keeping the faith. We wish each of you and your family a very blessed 2018! Thank you for all the prayers and support!

Love Daryl and Charlotte

We wanted to share what an amazing Christmas at Casa de Lu! We were able to have the entire Lu family down to celebrate! It was wonderful for Daryl to be able to eat small amounts of food and  share in the Christmas turkey dinner and fixins!

The greatest present was to have Daryl home!  Hoping each of you had a  very Merry Christmas with family and friends!

Love Charlotte and Daryl

 

Late yesterday, Daryl was able to come home from the hospital! We were anticipating being there till at least the first of the year! Daryl had been progressing so well, that Dr Mansfield and Barones goal, was to get him home by Christmas! From the previous blog, we had one hold out doctor, that wanted Daryl to stay till Christmas Eve  for some blood work. Keep in mind, that with this surgery he will need calcium, thyroid and balance of an other  of electrolyte monitored to keep him in top running  top shape! Even with his ability to communicate with mostly with writing and facial gestures. . .. .his smile convinced the endocrinologist to let him go home one condition . .. follow-up lab work on Monday (Christmas). Done!

It is still amazing with the extensive  surgery, the progress Daryl has made. It is a head shaker at times! Dr. Mansfield told us Daryl’s cancer was about 4 cm ( size of a plum)  before the radiation it was 1cm.   I said no wonder he had issues trying to breathe before his trach!  Dr. Mansfield also changed his diet to FULL Liquids!  Can you say mashed potatoes, ice cream! Plus being in his own clothes, I will not miss seeing him in that green hospital gown, although he sill was handsome!

As we get older, for most of us, there are not to many  material things we need.  Even before this, Daryl and I tended to focus on the important “gifts of life” – health, happiness, and spending time with the ones you love.  This is never more true than this year. Christmas came early for the Lu’s  by the grace of God and all your prayers!

We wish each of you a blessed and wonderful Christmas!

Love Daryl and Charlottr

Festivus:

The non-commercial holiday’s celebration, as depicted on Seinfeld, occurs on December 23 and includes a Festivus dinner, an unadorned aluminum Festivus pole, practices such as the “Airing of Grievances” and “Feats of Strength,” and the labeling of easily explainable events as “Festivus miracles.” ^[5]

Daryl is progressing extremely well!  They have discontinued his pain pump and now he can receive his pain meds thru his g-tube.  They are increasing his tube feedings and he is up walking around! The BEST NEWS is he passed his swallowing study! That means he can start to have clear liquids! (only eat things you can see thru) This is the first time he is able to have a “meal” since Oct. 12th.    Broth and jello  are a 5 star meal and never tasted so good! If all goes well, he is still on track  to discharge home  tomorrow. His one endocrinologist would like him stay till Sunday, but we are hoping he has a change of heart!

The small Christmas tree (pictured above) I bought so Daryl could have a Christmas tree in the hospital! He had pumpkins for Halloween, a turkey for Thanksgiving, so of course a tree for Christmas!   Who doesn’t need a Christmas tree! Well, this tree has become very popular. Almost everyone that enters his room, makes a comment on how they love the tree and it puts a  smile on their face! Two of Daryls  Dr’s, in particular, have remarked repeatedly how nice the tree is.  Yesterday, we gave each of them a tree of their own.  They were both so taken  so aback and surprised, by this small gesture.  Today they each, spontaneously  reported where their tree was and how a member of their family  enjoyed the tree. Amazing that the small tree brought so much joy, but I think it was Daryls smile that brought them true joy!

 

We have our Christmas tree, but not our Festivus pole. Hopefully  a Festivus miracle tomorrow, our tree has already brought joy!  Thank you for all the prayers and well wishes! Till tomorrow . . . . .