Happy New Year!  We have returned home from our two week vacation/Duke follow-up.  We started our vacation with a wonderful visit to Martin’s mom and dad’s place in NC.  Grandma and Papa were very happy to see us.  We then traveled to Florida to visit with my dad and stepmother.  We got to stay on the East coast beach.  It was very relaxing and a very nice visit.  We only walked the beach one day.  The ocean was COLD! 

After our visit in FL, we traveled back to NC for a visit with Martin’s brother and his family.  The cousins had fun playing.  On our way to Duke we stopped to see the Smiths.  They are a fellow transplant family whose little girl, Rachel, is a beautiful angel watching over us.  We continue to pray for them and coping with their loss. It was so good to see them.

The boys had excellent check-ups with Dr. Paul.  All the tests from Tuesday, Jan. 5 were normal!  Praise GOD!  Even Trevin’s Hemoglobin was normal and he has not had IVIG (immunoglobulin replacement) since October.  They even told us to stop his steroid.  This is wonderful news.  He has gained quite a few pounds since last Christmas and we are hoping that his weight will come down with the ceasing of the steroid.  Too much weight can be harmful to his heart.  We are praying, though, that his Hemoglobin remains stable.  All other labs on both boys were fabulous.  I was just noticing today that it seems that Brayden has grown a couple inches in the past month!  We know that our boys are walking testimonies of God’s healing power!  We are so thankful for every day that we see their smiling faces.  Kiss your children and let them know they are loved, and cherish them everyday.

God Bless,

Gina

Merry Christmas to you and yours.  I don't know if anyone reads this blog anymore, especially since it has been over 10 months since we last posted.  All I can say is God is so good.  It has been a wonderful year.  Trevin's hemoglobin is holding its own and the boys have had only a few illnesses throughout the year.  We had a great check-up at Duke in July but were sad we didn't make it to see the children on 5200 for the 4th of July celebration.  As far as we know, the boys missed the H1N1 illness.  We were all really sick in late November which landed Brayden in the hsopital with pnuemonia.  Two of the four of us were tested for the H1N1 virus and it came back negative.  Brayden bounced back very quickly, though, but due to our illnesses we were not able to make our scheduled follow-up appointments at Duke in Nov. 

On a different note we were very sadden by a fellow transplant friend's death in Nov. 2009.  We had become close with her and her family during our journies together.  She was a VERY special little girl and she touched so many lives!  We will be forever changed by this amazing little girl.  Also by the transplant experience overall.  Medicine has come a long way, but we are reminded everyday that the doctors are not God, but with God all things are possible. 

We will have our follow-up appointments at Duke in early January 2010.  Both boys are looking forward to this particular one because they will have food challenges.  They have suffered from food allergies all their lives and now, since transplant, Trevin's are all gone and Brayden's are gradually getting better.  Trevin will try milk and Brayden will try peanuts.  SO exciting.  Brayden's Christmas list included "I wish my allergies will be all gone by July."  WOW!  How does Santa deliver that? 

Please remember children who are sick and in the hospital during this joyous season.  They are fighting for their lives and their wishes are very different than our typical Christmas wishes.  Please keep them in your prayers.

Happy New Year everyone.

Here it is almost Valentine's Day and we haven't updated since Christmas!  Happy belated New Year!  We were able to return home a week after the new year began.  We have been getting Trevin's blood drawn weekly from his newly inserted port here at home and the nurse that had so much trouble drawing his blood before is excellent at accessing ports!  It has been a blessing for Trevin. 

So far, Trevin's hemoglobin has remained normal on its own.  Because of the new medications, though, a mild form of his shingles returned.  We were able to catch it quickly before it became full blown blisters and it is nearly gone already.

He and I just returned from a visit to Duke for a follow up and he has been given a clean bill of health. Before our little "set-back" he was down to just a couple of medications daily.  Since, he is on nearly all medications prior to and some. He will still have to conitnue with these medications, but he is able to return to school for half days.  We met with his principal, teacher and aid today.  He is very excited to go back to school.  We will follow up again at Duke in April with bi-weekly screenings from home.  Our doctor here at home, Dr. Shaw, has been amazing!  He has been instrumental in Trevin's and Brayden's recovery and we are so blessed to have such a wonderful doctor!  Thank you, Dr. Shaw!

We were able to visit with our friend Rachel and her family while in Durham and so far she is doing well.  She also had a minor "set-back" but is better already.  We continue to pray for her recovery.  Also, while we were there a little boy named Jaxsen had to be flown to Duke from Georgia for seizures.  He and his brothe both had transplants and were in the same rooms as Brayden and Trevin in December of 2007.  They have had many bumps in their road to recovery, but this one is the hardest, it seems.  They are unsure why he is having seizures and we ask that our readers pray with earnest for his recovery!  Pray for the doctors to diagnose the seizures and for God to heal his fragile little body.  He is the same age as Trevin and his brother, Zach, is a year older than Brayden. Here is their website: http://www.caringbridge.org/visit/zachandjaxsen

We will update soon.  Sorry for the lengthy time between updates. We have learned from reading others' websites that when a long time has gone between updates it usually means that things are good and returning to "normal."  Thank you to everyone who follows our site and continually keeps the boys in their prayers.  Please remember to pray for those we have mentioned and others we don't know. 

Gina

Merry Christmas to all!  Gina and I have been up since around 3:30am when Brayden first reared his head.  Trevin awoke shortly afterward, so I guess we were all excited to see what Santa had brought us!!  We just happened to get an "early" start on the day and on opening gifts!!

It has been a real joy to watch our boys "hard at work" this morning, doing what boys should be on a Christmas morn.  Being able to watch these two "gifts" in action reminds me of the world's greatest gift, Jesus Christ.  "For God so loved the world that he GAVE his only begotten son . . . "  What an awesome gift that God would GIVE and GIVE UP his only son for us! 

We hope that your personal celebration is filled with love, togetherness, and the warmth of family today.  Our day will be filled with appreciation for the many who continue to help us in so many ways, and for the God who makes all things possible.  We are simply thankful to be together, no matter the location or circumstance. 

Merry Christmas all!

Martin

All good news to report.  Trevin is doing well, and so is his hemoglobin!!  He has been holding steady since last weekend, with no extra transfusions needed.  All other counts are looking good, too.  He will still be required to be here for another three weeks for treatment and observations, but it should all be on an outpatient basis.

Fortunately, we were able to get into an apartment here.  Brayden and I drove down Friday after he finished his week at school.  We were pleasantly surprised to find an apartment full of decorations, Christmas tree, stockings, and many other goodies.  A HUGE, HEARTFELT THANKS TO COURTNEY HURD with the Hendrick Motor Sports pit crew(s) - she completely coordinated and provided everything.  Courtney works tirelessly for children on the Duke transplant floor and for their families.  The entire Hendrick Motor Sports folks are the very best and continue to amaze us with their generosity.

Tomorrow, Trevin will have minor surgery to install a "port" into his body.  A port allows a central location to get blood draws, administer medications, and with no more prodding around Trevin's body trying to find usable veins!!  I believe he was poked last weekend somewhere in the neighborhood of twenty times - something nobody should go through!!  At any rate, this should be much easier for him because he won't have that frustration any longer.

The rest of us are good.  We wanted to spend Christmas at home this year, but home is where your family is together.  So, we spend another slightly warmer Christmas in Durham again this year.  We are just thankful, no matter the location, to all still be together, the way a family should be.

Martin

We have had an interesting weekend.  We are currently at Duke on the 5200 BMT floor.  We arrived by MedAir from our hospital in Huntington, WV on Saturday the 13^th.  Trevin’s hemoglobin dropped on Friday causing him to turn pale and complain of a headache.  After many sticks and finally a blood draw, it was determined he would need a transfusion.  We were admitted to our local hospital.  Unfortunately, they are not equipped to handle post-BMT transfusions that are complicated by antibodies.  In addition, they were perplexed that his blood type changed from A- to O+.  After arriving at Duke, we expected to have a transfusion and back home in a couple of days.  He did not get his transfusion until Sunday morning due to the complexity of the antibodies created by his body to destroy his red blood cells. Also, we will have to stay in the Durham area for outpatient treatments for the next several weeks.  They are giving him an infusion that searches and destroys the cells that are causing the problem.  The infusion is given once a week for four weeks.  While this is very unexpected for us, the doctors are optimistic that this was an isolated incident and we are hoping it will not happen again.  This incident is not all that uncommon for post-BMT patients.  This is just a small bump on the road to recovery.  Martin and Brayden drove up on Saturday and are having to go home today so both can finish school before Christmas break.  They will come back on Friday.  Please keep Trevin and all the children who are ill in your prayers!

God Bless and Merry Christmas,

Gina

We have SO much to be thankful for - two very healthy boys to start the list!  This past week, we spent three days at Duke undergoing many tests.  For Trevin, this was his one-year visit - we celebrated one year past his second transplant on Nov. 14. 

After those three days of testing, we are proud to announce that both boys are doing really well.  They both had the highest test results since their transplants, and the doctor was very pleased.  Trevin, who was still on some immunosupression meds, was finally taken off of those meds altogether - very good news and signs that his immune system is working on its own now.  He is now down to about 5 meds altogether - a huge difference from the 14 he was on six months ago! 

Both boys underwent a developmental evaluation as they did just prior to transplant.  Brayden was about the same level, and improved slightly in a couple of areas.  Trevin, on the other hand, had exponential growth and development, both cognitively and physically. 

Lastly, Trevin was tested for allergies while at Duke via a back-scratch test.  There was also a blood test performed, but the results won't be back until about a month from now.  According to the results of the back test, Trevin didn't really react to anything - a very good sign for environmental and food allergies!  However, we will wait to introduce "new" foods until the blood test results return.

The past few days have been spent at Jim and Nancy Saunders' house for Thanksgiving.  We have had a good visit, and it's great to be able to travel with the boys again!!  They are enjoying it, too.

It's hard to believe that a year ago we were in the hospital with Trevin, about two weeks post-transplant.  To look at both boys now, one cannot help but believe in miracles.  COUNT YOUR BLESSINGS!!!

Love to all of you, and thank you for your continued support and prayers.

Martin

Where is the time going.  Praise God for every moment of it.  Everyone is doing great!  We have seen the doctor here only twice since our appointment at Duke in Sept.  Brayden has officially survived his first sinus infection/ear infection with the help of an antibiotic.  Trevin also had a cold, but he conquered it on his own without extra medications. WOW!  Since then, both have been well.  We have FINALLY made the decision to have Trevin's blood drawn by our local hospital's phlebotomist instead of the hem/oc nurse.  Bless her heart, she has so much trouble drawing his blood.  The first draw from the phlebotomist will be next week.  Hopefully it will be a much better experience for Trevin. 

Just a quick update on their donor cells.  Brayden is holding steady at 33% whole body donor cells, but the important thing is his T-cells are functioning and communicating with his immune system.  Trevin is still 90% donor!  He suffers from a small amount of sun exposed GVH, but is kept under control with topical creams.  His immune function is even better than Brayden's, but that is to be expected due to the donor cell difference. Everything else about their blood work is normal or near normal.

Brayden made the HONOR ROLL for the first six weeks.  This is amazing to us considering he had school only an hour a day during his fourth grade year while at Duke.  We are so proud of him.  Trevin is also doing great with his home schooling.  A teacher comes an hour a day, four days a week.  He is eager to learn and keep up with his peers so he can return to school soon.

PLEASE keep the all children who are sick in your prayers and also say a prayer for their parents/caregivers.  It is not easy to see your child/children suffer.  Give thanks, though, for the children who are healed and getting a second chance at life!