August 29, 2010

Howdy folks! Garrett continues to feel better after a two week bout with a bug from school. His system just isn't real strong yet, but we're excited that he is beating it. He's been starting to get nervous about his biopsy next month, so we keep busy doing fun things. A highlight recently was a special trip to a Rockies' ball game, courtesy of Make A Wish. Garrett was given a bat and got to spend time on the field during batting practice. He met several of the players, who signed his bat. Todd Helton even gave Garrett the batting gloves he'd just worn. To cap off the day, he got to visit with Jason Giambi, who Dinger really likes. It's a toss up between Helton, Tulo and Giambi for his favorite player. All three were gentlemen and kind to our little cowboy.

The nightmares are coming back again, but I'm sure it's because of the surgery next month. I had to wake him last night a couple of times because he was literally fighting so hard he was going to fall of the edge of the bed. We handled it like we always have, staying up together and watching baseball and rodeo. He's tired today, but in good spirits. We went to church this morning and he was so excited to be there. He truly understands the need to have Christ in our lives every day, to serve rather than be served, and to give back to God on Sunday for that special hour or so where we are in His house and worshiping the most loving of fathers.

Later today he gets a really big surprise. His "auntie" Barb is going to take him to the Bronco/Steeler game. Garrett doesn't know. He thinks he's just getting a ride to Denver to meet with his mom for the Rx apt. in the morning.

Garrett's blood pressure and heart rate continue to stay consistent, which is good. At least it's not getting worse. The biopsy will tell the story and let us know if we've beaten this illness once and for all, or if it's just knocked down and will eventually re-attack. Of course, that's always a possibility, but we hope and pray that for a while at least, the bad lymphocytes, T and B cells, are destroyed and his immune system is re-building as a more gracious host.

We didn't do too well with our hunt for a new horse yet. We've had a few nice offers, but are holding out until we find just the right one for him. After missing so much the past few years, he really needs a stick that will let him build his confidence back up.

Please keep Garrett's cousin Levi in your prayers when you remember the little cowboy. Levi and Garrett are so close, and Levi's brother Noah was taken Home a few months ago very suddenly. It's been pretty tough on the family this year and Levi is in stage IV cancer. We keep praying that both boys will beat their illnesses and let us go into the holidays as complete a family was possible.

I hope this update finds you all blessed and enjoying the last days of summer as God starts to change the colors and prepare us for Christmas. They will be more to follow, but I wanted to let everyone know that it's "business as usual". We're not out of the woods, but we can see timberline.

God bless and remember to smile. Your prayers have helped us stay strong and we continue to fight.

JD

August 18, 2010

It seems like a lifetime ago when Garrett was having chest pains early this year, and it was only in February. February of this year he was having chest and arm pains. They conducted a number of tests including a stress test and could not determine anything. Since then, as we all know, Garrett got very, very sick and we almost lost him in April. Since then, barring a few set backs, he's come back strong. We're still running the race and praying daily for the energy and steadfast commitment to stay the course and not deviate. Admittedly it gets a little tiring sometimes, just keeping the pace, but we're so blessed to be back home again.

Garrett's check ups keep showing positive signs that his heart function is very good, considering. He was able to try school but we found his immune system is just not that strong, yet. He got sick the first week and now is home fighting a full-blown sinus infection. His white cell count is up and his vital signs have changed just enough to show that he is fighting some stuff. He'll be home this week with another check up tomorrow. Hopefully he'll be able to knock this out quickly. Sinus issues can cause problems in the heart for these kids.

Having to stay home had its up side, too, though. His cousin Levi, who is in stage IV cancer, got to come out and spend the day with him. Those two boys love each other so much and it was a neat opportunity for them to just take it easy and hang out together.

Overall, we're optimistic that he'll keep getting stronger over time and by the end of September, his biopsy will show a clean slate. That's the goal, the wish and our prayerful hope.

Each day brings more promise, more sunshine and more proof that God is all merciful and true.

JD

August 13, 2010

Garrett's had a pretty good couple of weeks. He's back in school and we're a little nervous, but he's so happy to be with his friends. At the same time, he's scared he might get sick again. It's a heck of a thing for a 5th grader to have to worry about. He did give us a scare the other day but it turned out to be a false alarm. He became ill at school and was symptomatic of the same type he displayed when he became real sick early this year. We think it was just a little bug.

It's about midnight and Garrett finally fell back asleep. His nightmares are coming back and tonight's were doozies! He keeps dreaming of being in the hospital. It could be because he had a check up today. His heart function looked good and he's definitely better. We keep praying that we've really whipped it down this time. The biopsy will tell the story. But to look at him, he's nearly back to how he looked before he got sick last spring.

Tonight brings back so many memories. It's been a tradition, of sorts. Ever since Garrett was a little diaper filler, he and I have shared the tough nights by watching old NFR tapes when he can't sleep. I hate that he has these nights, so many of them over the years, but I feel so blessed to have the chance to share these moments with him.

Today the transplant team looked at some skin changes in Garrett's hands and wonder if it's late reaction to the last chemo. It seems long out from the infusion, but it's possible. We'll just have to watch it close.

As the summer starts to wind down we've glanced back at the past several months. My, how far we've come. I wish I could say we don't have any more trails to take this year, but with God's unending grace, they will be short.

More to follow.............

God bless,

JD

July 28, 2010

Well it's been a week or so since I added an update, so I figured I should drop a note and let everyone know how things are going. Each day continues to be a blessing and we're one day closer to complete recovery.

Garrett's infusion went really well last Friday. His anxiety was high going in because of too many past problems. He cried a little and said he wished he didn't have to get sick again to get better, but he "Cowboy'd Up" like he always does. We only hoped he wouldn't have any bad reactions to the infusion this time. It gets ugly.

We decided to try something new this time in an effort to make it easier to find a large vein for the infusion IV. The problems in the past have been outlined several times. They include blocked/scarred vein sites and veins too small for the medicine/chemo, resulting in severe burning. Garrett and I started doing push ups a few weeks in advance to try to force blood into his arms and swell those veins up in the lower part of his arm just below his elbow. This is an area where they've had trouble finding veins in the past, but we know good ones are there. The trick worked like a charm! They stayed away from his wrist and inside elbow area and found a good, big vein right there in his forearm. They hit it on the first try and he never felt the chemo! The rest of the day went well and although he got sick that night and wasn't feeling well then next day, by Sunday he was back to his ol' ornery self and driving momma up a wall.

We had some friends come in to town Sunday afternoon from the High School Rodeo Finals and Garrett got to play with one of his "heroes", Brody, who is a stud bull rider. I got some great shots of Brody helping Garrett on the bucking barrel. Momma wasn't too high on that, but he's earned the right to be a boy and play hard. :-) I won't let him over do it. Just look at the picture...he's having a blast. A few short months ago we couldn't have dreamed he'd be doing this now. We don't know what tomorrow brings, so he gets to have fun while he feels like he can. I just don't have the heart to stop him from doing some things that bring him joy.

Garrett still has a long way to go before we're out of the woods, but just having few comfort issues is huge right now. The doctors said they now feel confident that Garrett is winning the battle and this last round of infusion should put us into that area we're hoping for, but won't know for sure until the biopsy in September. We feel like his increased activity level is not just because the bad stuff is knocked down for now, but down and out. Until the biopsy and tests, it's just stay a little more secluded because his immune system is compromised again, head up to Denver for check ups twice a week and try to stay healthy. Just heal up at home and enjoy every day to the fullest.

We did discuss the possibilities of another "bad" biopsy report in September and the options then are not fun. So we're not going to focus on the "what ifs", but instead greet every day with a positive "Cowboy Up" victorious attitude and hope for the best outcome. Wringing our hands and worrying is not what God wants. That's the enemy trying to beat us. All God expects is for us to to fight against those things that keep us from His glory. That is our goal.

For now, we're very encouraged. Garrett has been sleeping better with few bad nightmares, and with the exception of some discomfort in his legs and arms from the results of the chemo once in a while, he's relatively pain free most of the time. He really wants to go to school this fall, but probably won't be able to start on time with the other kids. Not until we're very confident he can handle being around all the germs.

I want to send out another very special "thank you" to so many who continue to read, pray and support this battle. You know who you are, but probably will never truly understand how deeply humbled and appreciative we are for all you do.

God bless.........

July 19, 2010

Well it's a new week with new information to share.

Kathy got home from her trip and I'm not sure who was more excited to see her; me or the kids. After a week of playing "Mr. Mom", I'm sure glad to have the foreman back in town. The kids, too, are really glad that she came home and took my big stick away from me.

Actually, we had a great time together. Warren and Garrett spent nearly every minute doing something together and the messes they made were worth the joy I saw. Warren went to the hospital with us and stayed by Garrett's side through all the check up routines. Garrett truly looks up to his “big brother” and Warren’s patience impressed me. Both boys treated Jessi fine although she spent much of her week playing with her little friend Lexi, from out of town. The girls have known each other since birth as they were born in the same room, both premature, less than 24 hours apart. They became room mates in the neonatal intensive care unit for the next month or so. It’s pretty keen to see them together.

Our highlights for the week included a private tour of the Pro Rodeo Hall of Fame and box seats for the rodeo, all courtesy of Brenda and our friends at the PRCA. Then on Saturday Marc and Christina Smith, members of the Hoyt and Peterson’s Bow hunting Archery Pro Staff and many others whipped the mules to pull off a benefit archery shoot at the Air Force Academy range. Their kindness is second-to-none. We were able to stop by for a few hours and had a blast. All the kids got to shoot and Garrett even beat me on a “closest to target” shot at a quarter sized dot. There truly is nothing like sharing God’s outdoors with a child.

The unfortunate lowlights of the weekend were Garrett's cousin Levi having to undergo emergency surgery to relieve fluid in his lungs. That fighter is doing better, too. Later we finally told Garrett his beloved ol’ mare died. There never seems to be a good time for bad news. His little heart was shattered and he sobbed for her. But I promised him a replacement and will make that happen soon. We tried yesterday but it wasn’t a good fit.

Today, and only home a couple days somewhat refreshed, Kathy got back in the saddle and took Garrett to the hospital for another check up. But we received information about his antibody levels and they’re still too high. Sometimes all of this information gives a distorted panoramic perspective of where we've been and where we need to go and it can be hard to comprehend the magnitude of the situation. I've always said that you can only eat an elephant one bite at a time; it just seems that every time we take a bite, like a lizard tail, a daggone piece grows back.

As good as Garrett has been feeling compared to where we were a few months ago, he's still got quite a journey ahead of him. He is apparently not producing the antibodies from the donor heart rejection, which is good, but the PRA (Panel Reactive Antibody) level is still too high. So unfortunately we have to go back in this week for another round of infusion. The PRA level is driving the infusion treatment regimen right now and it appears to be working. We’re just not there yet. Treatments to reduce his PRA include the Rituximab (a B-cell specific antibody), IVIg, protein A immunoabsorption and plasmapheresis. These are all the ones their doing/have done on Garrett so far. The PRA is a blood test routinely performed on patients waiting for kidney and heart transplants and it measures anti-human antibodies in the blood. Patients showing high PRA’s are often referred to as ‘sensitized’. Patients with high PRAs are less likely to receive transplants if they need them, as the risk for immediate antibody-mediated rejection is significantly increased. That means it’s a bad thing.

When I had the chance to look at my sleeping family all together at home again on Saturday night, I wished I could snap my fingers and let them all dream the perfect dreams and wake up to a perfect world with no fear or pain. But as a friend once told me, that's Somebody else's job. The only perfect place is where we will all be together in paradise. So my job now is just to give them all completely to Him, follow His will and stay the heck out of His way. He works better when I’m not trying to fix things.

JD

P.S.: By the way....Garrett does NOT need a new heart. We hope he won't. Help me stop the rumor.

July 11. 2010

It has been a short while since I've updated this site and quite frankly, was waiting for something happy to write about. Well, we have it! In the midst of the recent bumps in the trail we've been teetering a little and started having doubts. Not doubts about God's great will, but doubts about our own ability to handle yet another blow with the type of disposition and an upbeat spirit we expect of ourselves.

I’m proud to announce that we’ve pulled through and still see a shining light ahead of us. Just as any loving father does, our Father in heaven picked us up off the ground when we fell and dusted off our britches, set us back on the pony and said “ride”. We have, and it's a good journey.

Garrett’s check up on Friday was a blessing! His heart rate was 107, but has been as low as 92 recently. The real excitement came with the reading of the echo. The physicians told us that Garrett’s heart has “definitely improved” and looks “as normal for him as it can be at this time”. We’re super happy about this news. Garrett looks better, feels better and is healing better now. Garrett told me “daddy, my heart feels better when I’m out of this * place.” There’s something to be said about the healing power of home. We lost Noah, but Noah was the reason I brought Garrett home.

We still have a journey ahead because on top of the general healing still to come, Garrett has right ventricular hypertrophy. In layman’s terms, it means he has thickening of the heart wall in the right ventricle. Extreme cases of this are deadly. If his got worse, it would mean another heart transplant would be needed. For now, the doctors are not disturbed because they say Garrett’s had it for a while. But they’ll be watching it closely and we’ll be praying that it does not worsen.

The other great news we have to share is our house guest this week. We have a rare loving relationship with Garrett’s donor family since God saw to it that we all met when Garrett got his new heart. In the two years since, we have become extremely close. Garrett and Warren (Darren’s younger brother) share an incredible relationship and Warren has come to stay with us for a week. Just being with Warren brings Garrett great joy, and Warren is a tremendous role model for Garrett. He is a great young man for Garrett to emulate. As I write this, the two boys are asleep in the bed next to me. We're in a hotel in Denver because Garrett has a check up in the morning.

Meanwhile, Kathy and Warren’s momma are sticking their toes in the sand on a beach and getting some much needed relaxation. They’ve both been through so much and the kindred friendship they have helps them both heal. I pray with all my heart that Kathy's tender heart begins to heal with this trip.

We know we're not out of the woods. Even as I'm laying here writing, Garrett just woke a few minutes ago with a terrible nightmare. They are terrifying to watch and must be more so to endure. Thankfully, he does not remember them usually. This one was pretty nasty and for a minute I thought he couldn't breath.

But when I look overall at all we’ve been through, I can’t help but see the blessings each bump has produced. So we’re going to stay strong and try to give better than we get. Jesus taught us that for he who has been given much, much will be required. Well, I’ve sure been given a truck load of blessings so we’re going to stay on our toes and remember to give all the glory to Him. We just have to keep getting up and putting on our armor of God every day and stay prepared for battle.

Life has many challenges, but it is pretty dang good.

JD

July 1, 2010

It’s been quite a week. Quite a week. It really has been a journey within a journey for our little cowboy. On top of the uncertainties of his own health, he’s been trying to grasp and understand why his cousin, Noah, is gone. Jessi, too, has cried every night at bedtime. They want their “Noahee” back. But God has called him home, and our Lord has the final word. Once again, the kids are hurting and daddy can't make the pain go away.

Kathy and Garrett burned up the road between Denver and here to take care of the hospital necessities and to be with the family as much as possible. With everything going on, I made the decision to bring them home. The time has come. The Ross Tribe has been through enough bumps, dips, arroyos and hills and we need to be together, in our own home. We'll continue to fight this battle, but want to do it on familiar ground. I called the folks at the hospital and explained my plans. I didn’t ask for permission. I just told them that this latest blow is too painful for Kathy and Garrett to take long distance. After some discussion, the doctors agreed. Garrett has completed what we hope will be his last chemo-infusion last week and now it’s just hurry up and wait until the next biopsy. They feel, too, that with the dry roads of summer we should have no problem getting Garrett up to Denver for his check ups a few times a week. If we're still in this fight come winter, we can always go back. We just need to be home for a while. We need to decompress. I told them that I believe to let Garrett sleep in his own bed, be with his complete family every day and play in his own yard will do more to help his heart heal than our other options right now. He and Levi (Noah’s brother with stage IV cancer) also need to be with each other. They feed off of each others’ highs and lows, and share that common bond that those of us not fighting every day for life just can’t comprehend. It's kind of like men who have gone through war together. Only they truly can understand that bond. I can tell you it's a wonderful thing to witness. Kathy and Bonnie, too, (Noah and Levi's momma) need each other close.

Today we were split again as Kathy and Garrett had to head to Denver for his appointment at the hospital. I stayed behind to see Noah one last time in this life, and to kiss him goodbye for all of us. It still feels like a bad dream. Later today and without much fanfare, Garrett came home. Tonight, we said our prayers together, in our own home as a family, knowing that tomorrow we don’t have to be apart. Not anymore. At least not for a while. We know that we have to go back periodically, and will have to stay up there for a short stint during the biopsy surgery, but for now we’re ok. For now, we’re home.

As for Garrett’s checkup today, not much change but he feels good. He’s ecstatic to be home and we really have to watch him because he won’t stop playing until he gets sick. The heat is especially tough on him. But having this boy playing this hard is a good problem to have right now. His face and eyes are still puffy and his pulse rate isn’t where we want it, but we’ll get there. We will get there.

Saturday we will send Noah on his way. Sunday, Noah’s ashes will be scattered across his favorite mountain range. Meanwhile, I still seek the words to help Garrett and Jessi deal with more unexplainable pain.

In one week’s time, two members of this family have come home. One here, and one there. Both are in a place where they will find joy and heal among those who love them. We’re so thankful that God blessed us with the time we had with Noah. He loved Garrett and Jessi so much and never, ever failed to let them know. They adored him in return. They will carry that love until they see him again, when there'll be no more tears. The real tragedies are found with those who leave this earth never having felt this kind of love.

Continually blessed, constantly consecrated in His grace and Mercy.

In victory,

JD