Home Again & All is Well!

Bethany and I were able to return home late Tuesday.  She did great with her colonoscopy and endoscopy, and the results showed no lymphoma, no inflammation, and no active ulcerative colitis.  Praise God!

Thank you for all your prayers and concern for her.  Please keep praying.  We are still just five months out from the removal of her biliary tubes, and we are continuing to monitor and adjust her medications to reach the correct balance.  The Epstein Bar Virus (EBV) continues to be active in her system, but those virus levels have dropped.

Bethany’s low hemoglobin levels seem to have been caused by the constant lab work we have needed to perform.  We are adding an iron supplement, and we hope to soon reduce the frequency of blood draws.  Bethany’s other symptoms (fatigue, stomach pain/pressure, and diarrhea) are possibly related to her elevated EBV numbers, but they also could be attributed several other possibilities.

Ultimately, Dr. Romero was thrilled with all of Bethany’s results.  This is the best news.  In his words, “Go home, enjoy the holidays!”

Those are good words.  We are so thankful and appreciative.  Thank you for your constant concern for our family and prayers for Bethany.  You are our blessing!

As we enter the holiday season, and especially as Thanksgiving is just weeks away, allow me to encourage each of you to take a moment to breathe in the deep good air of life, love, friends, and family.  Life is about many things, but the word that floats around our home most days is the word “perspective.”

Occasionally, we all lose our perspective.  But, with reflection, gratefulness, and taking stock of our lives, goals, and priorities, perspective can be regained.  Do that now.  Regain what you might have lost.  Don’t wait until the opportunity passes.  Enjoy the many blessings now.  Later might not come.  Besides, a life well lived is a life which has been reflected upon and treasured moment by moment.

Treasure this moment now.

In His grace,
Taylor

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Clear Pet Scan!!!

It’s been a long day for Bethany, but it is ending on a good note.  Her Pet Scan came back clear!  Big relief, and an extra big praise to God!

Tomorrow Bethany will have and endoscopy and colonoscopy.  We still need to understand why her hemoglobin is low and what is causing her stomach pain, fatigue, and diarrhea.  There is still a chance for lymphoma which was not pickup by the Pet Scan, but most likely, Bethany’s Ulcerative Colitis is acting up.

Please keep Bethany in your prayers.  By the time she completes her tests tomorrow afternoon, Bethany will have gone without food for 40 plus hours.  She doing great right now, but she is smelling everything and wanting everyone’s food.

Thank you again for your prayers and concern.

In His grace,
Taylor, Angela, Bethany, and Jonathan

Update & Prayer Request

It has been five months since Bethany’s had her tubes removed, her liver numbers continue to remain steady, and she is having a great sophomore year in high school.  Over the past summer and several months, our entire family has been able to enjoy what I believe the rest of you call “normal living.”  It’s been wonderful to see Bethany healthy, full of energy, and joy.  It has also been amazing to make plans and actually expect and anticipate enjoying those plans.  This past month we have been on a 20 mile bike ride, hiked nearby mountains with friends, attended a fair, and chaperoned a middle school retreat.  Wow!  Lots going on and its has been a real treat.

Normal is pretty cool stuff, but normal with a transplant kid is never quite normal.  Normal still includes blood work drawn every two weeks, medicine required to be taken exactly 12 hours apart everyday no matter where you are or what your are doing, and then there is the constant monitoring and balancing medication to ensure we keep rejection away but don’t invite life threatening and cancer causing viruses into Bethany’s life.  This last “normal” has been a constant concern for the past five months.

The virus which caused Bethany’s lymphoma in the spring of 2014 is back.  Well actually, it’s been back since June, but over the past month the effects of the virus have been taking a toll on Bethany.  She been experiencing fatigue mostly, but this past Saturday she began to experience stomach pain, nausea, and diarrhea.  This is concerning because these symptoms are similar to what she experienced in April 2014 when her lymphoma was diagnosed.

This past Tuesday we did blood work again.  Bethany’s liver number look great.  Throughout the summer they have made steady improvements.  We give God great praise for this.

Bethany’s virus (EBV) numbers actually did improve this week.  This is an encouraging sign.  But, her hemoglobin is very low (9).  This could potentially indicate several possible causes, but instead of speculating, we have decided, along with her doctor, that a pet scan is needed.

This weekend Bethany is attending a teen transplant camp in Georgia.  Angela and I will be driving her over on Friday, and I will pick her up on Sunday.  Bethany and I will spend the night in Atlanta, and on Monday, we will go to Children’s Hospital for Bethany’s pet scan.  We will most likely be in Atlanta for several days for further testing depending on the results of the pet scan.

Please remember Bethany and our family in your prayers over the next few days.  Please pray specifically that:

  1. Bethany will be cancer free.
  2. God will fully heal Bethany of whatever is causing her fatigue and other symptoms.
  3. Bethany will have an amazing weekend at camp.  She is really looking forward to this weekend.
  4. If Bethany misses several day of school, that she won’t fall behind, and that her teachers will be understanding and helpful.
  5. One possible cause of Bethany’s symptoms could be Bethany’s other disease, Ulcerative Colitis (UC).  If this is what is going on, please pray her UC will go into remission and that her doctors will formulate a good treatment plan that will get this UC flareup under control but won’t further aggravate the EBV virus.

Thank you for your prayers for Bethany and our family.  We are so grateful for each of you.

In His Grace,
Taylor