Happy Easter!

I could not think of a better time for another update than on Easter. Exactly 11 years ago tomorrow, we came home after Garrett’s first transplant. Diagnosed in utero with Hypoplastic Left Heart Syndrome, we waited 9 months for a heart….7 of those months after he was born. He lasted, at the time, longer than any child on record. He refused to quit then, and he refuses to quit today.

Since my last update in February, we attended the American Heart Association Heart Ball in Colorado Springs. It was the second year in a row that they’ve used Garrett’s story to help raise awareness and money for research. In 2011, they raised $25,000 more than the year before, in an economy worse than a year ago. The blessings continue to reign as we continue to hope that Garrett’s story will help other children and families.

Garrett was given a gift of a turkey hunt in Kansas by some really cool men who own a local company. The trip was incredible. It was shared with Warren and Hal, the brother and daddy of Darren, the boy who gave Garrett his heart in 2008. Watching these two boys grow in their relationship and enjoy the brother they both need, makes a lot of the tears, fears and heartache seem worthwhile. Garrett didn’t get his turkey, but he’s hoping for retribution next month as he repeats his last year’s hunt with our friend, Marv.

It was during the hunt last year that Garrett became sick and was almost taken from us within a week. A biopsy scheduled in May will hopefully tell us that he’s completely clear of any issues and we can relax a little more. Incredibly, just a few days before the Kansas trip last weekend, Garrett began complaining of chest and left arm pain. We took him in to the local hospital and within an hour they had him hooked up to an IV and put Flight for Life on standby. They were very concerned and thought Garrett was having little heart attacks again. Understandably, we were scared out of our wits. Garrett was petrified and at one point started pulling the monitor wires from his chest and crying that he was “out of here”. He said “daddy, I don’t want to die. I don’t want to go through this again!” I hurt for him and his momma and sister, and I’ve got to admit that some of the memories keep me looking over my shoulder, too. Sometimes it’s difficult to focus on anything, and becomes an unpleasant distraction. His anxiety is still fairly high at times and the nightmares come and go, but I know that good news on May 3rd will help all of us a ton. It will be a pretty big day as they plan to biopsy the heart and enter both sides of the heart and coronary arteries. A long and trying ordeal to be sure, but necessary.

In the mean time, Garrett’s playing baseball again. He started out pretty scared, because two out of the last three years he’s gotten sick during baseball season. It has nothing to do with baseball, but it’s hard not to think about the connection. But he finally moved past that fear and is having a great year. He went 3 for 3 at the plate the other night and 4 for 4 in the field. He’s back!

11 years ago tomorrow, the day after we celebrate the reason for our faith, God let us come home. In the time since, we’ve traveled many roads, shared a cacophony of emotions and seemingly crawled the journey through some of the bumpy times. But Christ’s promises keep us grounded and give us strength to carry the fight another day.

Life is good, so greet each day with a smile.

God bless you,

JD

Feb. 4, 2011

It's hard to believe that we’re approaching 3 years since Garrett's last transplant and have witnessed the many changes and challenges for our little warrior. If I spend too much time thinking back on them, it’s bring tears of joy along with memories of terror.

Flashback: In February of 2008, Garrett began complaining of chest and arm pains. So his doctor in Colorado Springs decided to run an enzyme blood test and determined that he was having little heart attacks. At the Children’s Hospital in Denver they performed an emergency catheter procedure that scared Garrett to a near panic. I remember him telling me “daddy, I don’t want to die”. I will never, ever forget that day, and I never want to experience it again. A doctor who had known Garrett since he was born told us that Garrett had advanced coronary artery disease, and was dying.

We all know what happened next. Garrett was blessed within a couple of days with a beautiful, healthy heart from a beautiful, healthy boy who left us much too soon. Darren’s family has become our own, and they were by our side throughout Garrett's severe rejection episode last year, and Darren’s momma was with Kathy when Garrett was close to going home. These two ladies share a kindred relationship that most mothers will never know. She and her husband will join us in a few days for a very special event.

This year the American Heart Association will celebrate an annual event known as the Heart Ball. The purpose for this charitable event is to promote funding research, education programs and policies designed to help our Nation’s children live longer, stronger, healthier lives. Each year about 36,000 babies are born with some type of heart defect.

In Colorado Springs the Heart Ball will be held at the Broadmoor Hotel. For the second consecutive year, the AMA has asked that we share Garrett's journey in an effort to raise awareness. They will play Garrett's video that they made in late 2009 (http://www.youtube.com/watch?v=cV4GZCuE0TQ ), which evidently helped the Denver event’s success 2010. We have agreed to their request, honored that our story of continued victory may help another child or family somewhere. We really hope that doctors in Colorado will be able to use the money and eventually find a cure for this terrible disease.

During the years of fighting this battle, I have to admit that there have been times when I became very nostalgic and was missing the innocence of my own childhood. I recall being not much younger than Garrett or Jessi and feigning sleep so my dad would carry me to bed. I felt so comforted, so protected in his arms. His thick, calloused hands and his soft kiss on my forehead after he put me in bed. Now it's my turn to do this for my own children and do what I can to keep my own family from harm.

There are so many bad things that daddies can't prevent. But we sure can vote with our actions and by sharing this incredible journey, I hope to capture these moments for future generations and maybe spark the one thought or dollar that eventually helps stop children's hearts from getting sick.

God bless you all.

JD

Jan. 6, 2011 - Goodbye Levi. We Love You.

It’s been quite a while now since we’ve made an update to Garrett’s Journey, but it sure hasn’t been because there’s no news. We just wanted to wait until we had good news to share. Although clouded some by heartache, we grateful for our blessings.

Since the last update, we were able to all gather as a family and celebrate the birth of our Lord. Levi, although very sick, shared in this blessed event. Garrett and Jessi were so happy to be able to be with him. Garrett and Levi have fought together for so long and their bond is unbreakable. They’ve continued to fight with and for each other, praying daily for each others’ healing.

On Monday this week, Garrett underwent several blood tests to see if the PRA rejection numbers have come down at all. We were to hear something late today. As a quick flashback, in June shortly after his first rounds of chemo and plasmapheresis, the PRA numbers were around 90. We need to see them around 20. By September, although the cellular mediated rejection was perfect, the PRA remained at 89. This disturbed and confused us, but we’ve tried to stay positive and full of hope. With more hospitalizations looming after the New Year, we prayed for healing; for Garrett and Levi.

We were with Levi this morning as he was getting weaker. I brought him a kiss from Garrett, and a message; “tell Levi I love him, and ‘Cowboy Up’”. At mid day, God called Levi Home. He was in the arms of those who love him when he smiled and went away. An hour later, earlier than expected, we received a call from the hospital. Garrett’s PRA numbers are down 25 points to 64! We are finally seeing the positive movement we’ve been hoping to see. I’ll let you decide if Levi had something to do with that. I just know there is no such thing as coincidence. In the previous six months, they’d moved only 2 points.

While our hearts are broken to lose Levi from this world, we’re so grateful to have shared in his tremendous journey and being able to love him. We're better because of him. Now, he no longer has to fight and hurt in this world. He is in Paradise and in the arms of our Lord Jesus and Noah, who left us last June. I won’t presume to know God’s design, but must believe in His will and perfect plan. We don't know why we had to lose Levi and Noah in just 6 months. More questions than answers.

But today God called one home and gave another more strength to continue His mission. As we prayed tonight, missing our Levi, we thanked God for the beautiful day, for giving Levi peace and much needed rest and asked Him to help us honor Levi’s warrior spirit by putting on His armor every day.

Incredibly, in the midst of their own heartache and grief, Levi’s parents rejoiced with us and praised God for Garrett’s marked improvement. They are two remarkable, loving and humble servants.

The message I hear today was loud and clear. "Where, O death, is your victory? Where, O death, is your sting?" As death tried to take the moment, we were given reason to praise our Lord for Garrett's sake. Levi is no longer in pain, and Garrett is clearly getting better.

May His peace find you all. May His love comfort those who morn. And may Hope always overcome.

God bless,

JD

November 21, 2010

Up kinda late tonight because Garrett woke up crying a while ago after a bad nightmare. So since I was up, it seemed lik a good time to drop a quick note about his progress lately. He’s having pretty severe nightmares again and gets pretty scared about his heart. We’re trying different things to help ease his concerns, but it’ll take a little time.

The really good news though, is that Garrett doesn’t have to go back for any treatments until after the holidays. The doctors feel confident that the PRA situation will not get significantly worse in that time frame and because he’s had such a tough year on a number of fronts, they’re giving him a little more time. I’m truly grateful for their decision, albeit a little nervous to wait longer. I really didn’t want him to have to spend Christmas in the hospital.

We’ve let him go back to school, which has been truly good for his mental health, but he’s pretty susceptible to every little cold that comes around. He’s already fought several this season and is in the middle of a cold as I write this. That part scares the heck out of us. He needs to stay healthy. The school folks have been really good about letting us know when other kids are sick, and we just keep him home and “home school” him for a few days. But you can’t see all of ‘em coming.

Having the holidays coming up will be good for all of us. Garrett’s cousin is really, really sick with his cancer fight and after losing Noah this summer, we all need to be here and together during this Christmas season.

We’re continually blessed and thankful that God has kept Garrett from getting sick like he had been. The fight is still on, but we’re still winning. We absolutely will just keep putting on the Armor of God every day and placing the right priorities where they belong; every day is a victory and each sunrise brings opportunities for happiness and the glorification of God’s great mercy.

Hope your Thanksgiving is a wonderful one. Each day is really Thanksgiving, but we can only eat that much once or twice a year. Otherwise we’d all swell up like blowfish!

Walk with Him. If you get too tired, He’ll carry you the rest of the way.

JD

October 26, 2010 - The Battle Continues, But the Armor is Strong

Garrett continues to do as well as can be expected right now, and we are extremely grateful for that blessing. His checkup yesterday showed a little hickup in one of the anti-rejection medication levels, but not enough for concern at this time. We still have not recieved a read on the echo, but initial thought was that it looked "normal" (for him that is).

He's going to be an Air Force Cadet for Halloween this year, carrying his head high and pridefully wearing the uniform and wings he recieved from them. He still does not know that he will probably have to go in for more treatments in December and that's helping to keep his spirits high right now.

We appreciate all the continued prayers and support. We're going to WIN this fight!

"For we are not contending against flesh and blood, but against the principalities, against the powers, against the world rulers of this present darkness, against the spiritual hosts of wickedness in the heavenly places. Therefore take on the whole armor of God, that you may be able to withstand in the evil day, and having done all, to stand." Ephesians 6:12-13

Keep the faith!

JD

A Week of Happiness, Animals and Magic!

This past week has been magical for our little warrior and his family. Through the kindness of the Make A Wish foundation, Garrett took us to Disney World in Orlando, Florida last week. It was truly a magical experience, creating memories for a lifetime.

The week started only two days after Garrett’s biopsy. We were guests on an American Airlines “Wish Flight”, where dream land characters met us at the Denver airport, showered the kids with gifts and sparkly confetti. A special cart took us to the plane staging area where the kids had a special baseball themed cake for breakfast. There were probably a couple dozen folks there, all dressed up in different themes. There were balloons and gifts; the area was decorated and a big sign over the gate told the world that Garrett Ross was the honored dignitary.

From there we flew to Miami. The plane was named for Garrett (stenciled on the outside of the 737) and the kids had their own special seats in the craft, again, all decorated up. They were given candy and cake and pop and all the “bad” fun stuff. The watched movies on the flight and were catered to all the way. In Miami, we were met by many more Make A Wish folks, who picked us up in a friendly-dragon themed cart that took us to the connecting gate. There, we were astounded by a huge castle themed set up. More cake, angels, fairies and Disney characters were there. More balloons and gifts and we met several other Make A Wish families from across the country. A face painter was there and a balloon animal creator, kept the kids busy playing games and having fun until the plane took off for Orlando.

At Orlando, we were met by Disney Characters, whisked away to the Avis rental car place, where the kids received more gifts. Even mommy and daddy received a gift basket of nice adult beverages for the vacation. We drove from there to “Give Kids The World” village in Kissimmee, Florida. That place is amazing! A small, security protected village, the GKTW city is completely magical. Themed for candy land with a water park, train, fish pond, three eateries, playgrounds, carosels, talking trees and dinosaurs. Mayor Clayton, the giant friendly rabbit, had parties for the kids every night. They could have ice cream for breakfast if they wanted and pizza 24 hours a day! Only 20 minutes from several major theme parks, the GKTW village is a remarkable venue. Garrett, who is normally a little apprehensive about taking his shirt off in public because people stare at his scars, was completely at ease playing in the water with lots of other Make A Wish kids who all had scars of some kind. It was remarkable to watch.

We met a family there who have a beautiful 3 year old boy who had a liver transplant. I actually had to pray for forgiveness because of the envy I felt when I learned this incredible father was able to save his sons life by giving him part of his own liver. How I wish I could do that for Garrett. I'd give him my own heart if I could. This family blessed us so very much and we hope to stay in contact with them for many years.

The Disney Parks were everything we’d hoped for, and more. We spent 5 full days meeting so many Disney characters, getting autographs, collecting pins, seeing animals of every kind, petting dolphins, watching killer whales, taking a dozen rides on roller coasters and water rides, getting soaked and laughing non-stop. We even got picked to be in a Disney parade at Animal Kingdom, complete with costumes and a float trip!

In the evenings, we’d settle in to our very own villa where we enjoyed real modern plumbing, meaning we could take more than one shower at a time and not run out of hot water! Truly a boon for the Ross Tribe! Each day the kids would received a gift from Mayor Clayton’s helpers and (within reason) eat whatever they wanted.

There were no down sides to the trip, with the slight exception that athough Garrett and Jessi do not know about his poor PRA blood work, Kathy did and it hit her pretty hard down there one night. I comforted her the best I could and prayed with here for the fear to go away. We tried to put the unknown aside and just enjoy the week.

Now back home, we had more interaction with animals, but not quite as fun. Our first night back, Garrett’s little terrier Stella found the working end of a skunk and then ran into the house. Guess who got to deal with that ? Welcome home…ha!

Reality strikes again tomorrow as we head back to Denver for a check up and meeting with the transplant team to see what steps we now need to take. Garrett has been on such a high lately, I’m really praying that his morale will not take a big hit.
When we know more, I’ll be sure to write.

We continue to be blessed beyond belief and the kids especially received a very needed reprieve from the pain and fear, on a trip that only before we could only dream about. See, dreams to come true!

God bless and keep you all,

JD

September 30, 2010

Well, I promised an update as soon as we got word about the last test we were waiting for. The results of the PRA came in late this afternoon. Unfortunately, we got the wind knocked out of us a little today as the results weren’t what we had hoped and prayed for, but we’ve got to keep in mind the tremendous victory we had yesterday.

The up-side is that Garrett’s PRA is a little lower (89) than in June (96). The target range is around 25. So what does this all mean. Well, basically Garrett is out of immediate danger of general lymphocyte cell rejection and his body is not trying to kill his heart anymore. The problem with a high PRA is that is presents a different, increased potential risk of additional rejection than other cell-mediated rejection. A high PRA can cause immediate rejection of a new transplanted heart, in spite of powerful anti-rejection medications available right now. But since we’re already in to our 2nd year with this heart, I feel like we’re ahead of the game.

We’re staying positive and know that God has the Perfect Plan for Garrett. Because we’ve completely beaten the lymphocyte rejection now, we’re on top of the fight. What we have to do now is set our game plan to fight the PRA and get it considerably lower. This means he’ll most likely have to undergo more IVIG, Cellcept increase, prograf infusion and plasmapheresis again. In talking with the doctors today, we all feel that the family needs a little vacation to relax and we’ll set our battle plan when we return. I’m hopeful this doesn’t mean another relocation to Denver, but we’ll do whatever we have to do.

I don’t want anyone to be disheartened by this news. We are winning this battle! We knew this would be a long fight and we have to stay strong and continue to take the fight to the enemy! We need everyone to stay positive and continue to pray for complete healing. We’re not out of this. Not by a long shot.

We’ve already increased his daily medications and cellcept levels. Hopefully that will help prepare his body so if/when we do more treatment, it will be shorter than normal. It’s not uncommon for kids to have to undergo 6 plasmapheresis sessions (oil changes) in a two week period when their waiting for a transplant. We’ve only done two. We’re blessed.

Kathy and I have decided it’s best not to mention this to the kids right now. Garrett is on such a high by having a zero number from his cell biopsy, and feeling good about yourself is a great healer. It's been kind of a roller coaster to say the least and they need a break. When the time comes, we’ll handle it as we need to.

I just wanted to post this and let so many who are wondering know that this week was a victory in spite of the overall results. Remember, we didn’t backslide at all. The heart is about the same, the cell rejection is gone and the PRA is down, if even a little bit. Any victory is still a victory.

God has control. He gave us a huge win yesterday and we’re going to show anyone who wants to see, just how powerful His mighty love can be. Tonight as I give this all to Jesus, I just look forward to a few days of my kids being free from nightmares, fears and unknowns. They’ve earned it. I love my family so much. I wish I could make the rest go away, but that job belongs to the Perfect Physician. For now, I will keep trying to increase my own faith and remember what Jesus taught us "If you have faith as small as a mustard seed, you can say to this mulberry tree, 'Be uprooted and planted in the sea,' and it will obey you."

JD