April 23, 2010

There are few sounds in life that are quite as beautiful as that of a child laughing. Especially children who haven't had much to laugh about for a few days. Garrett and Jessi were sitting together in the other room just a while ago watching old Carol Burnett shows and having a ball. He's now napping peacefully. He's earned it. What a great day!

You all know that this leg of the journey started on Monday afternoon. Started with a little rash and by Tuesday at 3am, Kathy had Garrett in the bathtub trying to cool him down and relieve the discomfort. By noon he was intermittently inconsolable. By 6pm he looked like a burn victim. He got a little comfort overnight from the oral steroids, but by mid-day Wednesday the pain was setting in. By bedtime, tylenol wasn't touching it. By midnight he was crying in his sleep. By 4am he'd been crying for a couple of hours. By 6am we were in the hospital trying to get an IV started. Over the next 10 hours, Garrett cried. I've seen him in pain before, but I've never witnessed anything like this. Even the nurses were getting tears in their eyes. No one could help him. It would just take time. He was scared that he might be getting paralyzed because he could no longer move his neck by noon on Thursday. Even trying to gently rub his head would bring cries of agony. Every nerve ending was fired up and it hurt for him to even move his fingers. I couldn't hold his hand. From his toes to the top of his head, he hurt. Inside and out. Sometimes he would cry out for Jesus to take the pain away. It was tough to witness.

At one point during the fight, Garrett stopped crying outwardly but the tears continued to stream down his face and he got really mad. He had an extremely angry look come over him and through pursed lips and gritted teeth he told me "daddy, I'm not giving up until God tells me to". It took all the strength I had not to lose it right there. What a statement from a tough little guy who has fought and won, his entire life. This warrior is cowboy tough and then some!

Kathy and I felt so dang helpless the last few days. The doctors couldn't just give him any ol' narcotic pain killers because of the potential for negative effects on his heart and blood pressure. Until he was more stable, they had to run another course. The ran an IV and put steroids in, which are designed to fight the allergic reaction. Basically what happened was that the chemo type infusion he had to undergo to fight the rejection, kills the "T" cells. The little search and destroy guys in the white blood cells. There are some anti-bodies left that don't die from the infusion. These little guys have the same tenacity that Garrett does, and they decided to attack the ATG infusion. During the battle, the molecules lock together and get deposited in nerve endings, joints, bones, skin....you get the picture. Steroids counteract that, but it takes time. Because he was in for heart problems and his blood pressure had been already a little low because that's another side effect of the ATG, they couldn't afford to just load him up on narcotic pain killers. They said this severe a reaction is not common, but is not surprising either.

Knowing all of this didn't make Kathy and I much happier. I was being selfish for my boy and I wanted him to get relief, NOW! It was mid-day on Thursday and Garrett had been in agony of some kind since Monday night. I've never, ever seen him in that much pain for that long. I can't even describe his cry. It tore at my very being. Kathy, too, was shaking it hurt her so much. We left Jessi with my sister-in-law. She didn't need to see her big brother like this.

But relief did finally come. Garrett fell asleep in the hospital bed and slept for about two hours. When he woke up, he was feeling a little better. By 5pm he was feeling much better and by 7pm he could walk on his own. The doctor really did not want Garrett in the hospital. He knew that this was not effecting the heart function, it was just a really nasty side effect from the IV infusion. They left the IV in and sent us home with some strong pain killers now that we were "on top" of the problem. We'd been fighting from behind for a couple of days and it just took a while to get the upper hand. Before we left they admitted that they were concerned about meningitis for a while, because the symptoms mimic each other. Thank God it was not. On the way home he made a very prophetic announcement. He smiled a big smile and said "Jesus is so awesome!!" He was really glad to be out of that hospital.

Garrett had a pretty restless night, so to speak, calling out in his sleep and flopping around quite a bit. "Sir Kicks Alot" thumped me good through the night. But that's ok. It beat being in in the hospital. He doesn't get to sleep next to daddy in there. He woke up this morning with the rash again, but happy and not in a lot of pain (that I know of) We gave him the meds right away and within an hour, he was comfortable again.

It'll probably take up to 14 days for this reaction to run its course, but we're on top of the pain and rash now, so we have the upper hand. Everyone slept a lot better last night and I pulled the IV this morning. We're looking forward to a few days of calm and happy kids. It's hard to believe the change. Garrett looked and acted like a burn victim for nearly 3 days straight, and now he looks and acts just like a normal, happy kid. He hasn't even mentioned the past few days except to say he was so glad Fr. Paul stopped by to pray for him. He and Fr. Paul are buddies and the good Father's visit yesterday was timely and needed. It brought some peace to Garrett's situation, and I'm very grateful for him in our lives. He's truly a holy man of God.

The nurses yesterday were top-shelf, too. They tried everything they could to help Garrett and were very tender. They've known him for years and are very attached to his journey, too. We really count our blessings through the tough spots. We prayed yesterday for Jesus to use our suffering as an offering to help bring others close to him, and to bring comfort to a close friend and cousin who are both battling cancer. In pain, there can be joy when the lesson is not wasted on feeling sorry for yourself. Garrett didn't miss this, either. As we said our prayers last night, he volunteered a special intention for people who "really need Him (Jesus)", and then thanked God for taking such good care of our family.

There are so many of you who are supporting and praying for our little warrior. God bless you all and thanks again for caring. We can't assuage the pain on our own, but we can be in God's tool box to use as He needs to accomplish that mission. You are.

Have a safe weekend and stay the course. We will too.

JD

April 22, 2010

Hold the phone. We're back in the hospital. Garrett's reprieve from pain was short lived. By 8pm he was pretty uncomfortable. By midnight he was miserable. By 5am, we were headed for the hospital. He hurts through his whole body. Even touching the hair on his arms hurts him.

Garrett has what is known as "serum sickness". The ATG infusion has many potential negative side-effects and it appears he's getting every one. The serum sickness is a hypersensitive reaction because of the infusion and can cause rash, swollen lymph nodes, joint and body pain, lowered blood pressure, enlarged spleen or even shock. So far, he's got nearly all of them.

Sorry to give you the wrong impression that he was better. We thought he was.

Because his veins were already burned from the initial infusion before the pic-line, the serum sickness is only magnifying the intensity of the inflammation and discomfort as they try to put in some IV medicine to help him. He had to take another IV needle, but we had no choice. But they are infusing extremely slow to minimize the pain.

When we know he's getting better, I'll post an update. Until then, I'm just going to stay at his side and pray for this to pass. He couldn't have had more than 6-8 hours sleep in the past 48 hours. They just gave him some Rx to calm him down and help this chronic pain. Historically, this can unfortunately last up to 14 days. My heart goes out to any child who's had to endure this misery for that long. There is nothing fair about this, that's for sure.


JD

April 21, 2010

Just a short update tonight. Garrett is feeling better today. We were litterally up until 5am trying to get him comfortable through the night. He kept waking up in agony. I had to hold his arms down a couple of times to keep him from scratching himself. He woke up better this morning and wanted to play. We did get him to rest some today. I knew he'd just want to charge on if he woke up feeling better.

Tonight it got a little tougher toward evening, but the Rx kicked in and his rash is much, much better. He no longer looks like a burn victim. Now it's more like a bad case of chicken pox.

He gets jabbed in the morning for a blood test and check up. We'll know more by late morning, but I sure don't anticipate they will re-admit him at this point.

He showed me who he is, again, tonight. A heart transplant friend of his was admitted for a day for some issues of his own. Garrett has been very concerned, in the midst of his own substantial discomfort, and want to do something for his friend. We pray and hope for his speedy recovery, with our little warrior's prayers leading the way.

Remember to hit your knees tonight so you can land on your feet in the morning.

G'nite.

JD

April 20, 2010

Well we've taken a couple steps forward and slipped back a step or two today. Garrett had a miserable day because of a severe reaction to the infusion drugs. Kathy called a couple of times today and both times I could hear Garrett crying in the background. Jessi and I packed up and came a runnin'. Kathy had been up with him since 3am. She'd given him three oatmeal baths, cooled him with wet wash cloths, rubbed caladryl lotion all over him, given him benadryl.....nothing worked. The hospital called in a prescription antihistamine, but it didn't seem to help. Kathy felt scared and alone with a boy who had cried nearly all day because he felt so bad. Garrett has put up with more pain and discomfort in his short life than most old men will in a lifetime. He never carries it very far. He only wants to feel better. As soon as he does, he's back to playing as hard as we'll let him. For him to cry off and on all day long, I knew something was up. I heard him in the background whimpering that he was scared and needed daddy. Say no more!

The hour and a half drive north came complete with four more calls from Garrett and his mommy. Now his hands and feet were starting to swell and the bumps on his body were getting worse. I paged the transplant team and was told it was an unfortunate, but sometimes anticipated side effect of the infusion. Knowing what it was didn't settle me down much. I wanted relief for that boy...NOW. They called in another script, this time for a steroid. Our only options were to try the oral type or run him to the hospital for an immediate IV to help stop the discomfort. Garrett has been harpooned, poked, prodded, stabbed, cut, jabbed, injected, needled and IV'd to the point they have trouble finding a good spot to start an IV now because of the scar tissue. Blown veins and backed up IV's in the past, requiring multiple attempts and holes, have left him pretty scared of another. This is the first time IV ever seen him want an IV....he was that uncomfortable.

In an effort to avoid the emergency room and the inherent germs found therein, we tried the oral. We also gave him more lasix to try and help his kidneys do their thing. The whole ordeal today wore him out to the point that he finally fell asleep a little while ago, so with any luck at all, he'll rest tonight and let the Rx do its thing. I'm not sure how to describe it, but I've never seen a rash like this on anyone. It's as if you rolled him up, head to toe, in poison ivy. If it is skin, it had a swollen, red nasty rash and bumps on it. Head to toe. He can't scratch, because he can't afford to open the skin due to the infection potential which his body can't fight.

I took his vitals a while ago. His bp is a little low, so I'll just take the night watch and rub his back while he sleeps. We're not that far away if we have to run him in tonight later. If he rests ok, we'll most likely run him in to clinic in the morning. God, I wish I could take it all away. Through the whole situation tonight, little Jessi was curled up quietly on the couch, watched us and said not a word. She's scared. Mommy's scared. Garrett's scared. So help me, if He'd let me, I'd gladly take it all myself just to give them a moment of peace. Tomorrow will be better. Sleep does wonders for the emotions.

I know this much - if Garrett wakes tomorrow and the Rx has worked, and he's no longer in pain from the rash, he'll act as if nothing happened today. He just doesn't waste time being upset today about what happened yesterday. Today has too many new adventures to hatch. Daggonit, but that kid is just tough as ten kinds of horseshoe nails!

Tomorrow will be better. It just will. Please don't let this story shake anyone. It's just the way it is right now. We know we had to trade poison for poison. They knew they had to make him sick in order to make him better. Sounds lousy, and it is, but that's just the way it is. It's not like we have other choices. It's fight, or curl up and suck your thumb. We're not about to curl up.

The kids at Garrett's school started a "Cowboy Up" week yesterday in honor of our little warrior. Jessi kinda scoffed that it's no different than "we" always dress anyway, but after I explained it I think she understands that most kids don't dress that way or understand what "Cowboy Up" really means. It's just their way of supporting Garrett AND her, and that's pretty keen.

I'm glad no one sees him on days like today. It's hard to take sometimes. We know there are more days like this ahead, but the prize at the end is too great not to wade on through. We're going to have some kind of celebration when Garrett gets to come home later this summer!

May the Peace, Joy and Love of our Lord be with you all this week. We feel all your prayers and they make days like today easier to whip. God bless you.

JD

April 19, 2010

Got home this evening, Jessi and I, to get ready to start our week away from Garrett and mommy. I could feel the tension build in me yesterday as I knew I would have to drive away today. Garrett cried when we left. That was no fun. The longing he feels for "normalcy" is pretty strong right now. He misses his own bed, his friends, his animals......his "normal" life. Last night was tough on him as he anticipated the separation. He just wants to come home. He will. It will just take some time.

He had a nice call from his cousin Levi last night and that helped him quite a bit. He's been hurting for Levi, who is fighting stage 4 cancer right now. I talked with my brother-in-law tonight and the both of us can hardly believe that Kathy and her sister both have boys fighting for life right now. Levi's 21 and a real big brother image to Garrett. Garrett knows how sick Levi is also, and he hates not being able to see him. We pray fervently for Levi every day.

Over the weekend Garrett got a visit from some very kind folks with the Western Wishes Foundation. He was given a hawk feather for his hat (Garrett's always worn a feather in honor of Lane Frost) but this feather came with a story. Travis (who gave the feather) told Garrett the hawk and eagle feathers are very special to the native Indian tribes and stand for strength with each feather indicating God in our lives and each part of the feather all of the people and events, and how they are all connected through God. It was a very cool experience for him.

After a day off at the hospital yesterday, we were back there this morning. There were no surprises, which is good. We know that his liver, heart and kidneys all are not up to par, but have not gotten any worse. The fluid in his lungs has dissipated and Garrett is feeling better. He did have a reaction to the infusion medications today in the form of a rash. It looked like a bunch of chiggers had a hay day on the boy. He just has to take it easy for a while and will continue to get better with each day.

I spoke with Garrett on the phone tonight before he went to bed and he's missing me and Jessi pretty bad. But I gave him some chores to do while we're away. He needs to watch every baseball game, especially Rockies games. That won't be hard to do because he's such a Rockies fan. We had so much fun watching the no-hitter together the other night. What a piece of history to witness. Life shares a lot of similarities with baseball. The best pitcher in the world can't throw a no-hitter by himself. It takes dedication, preparation, commitment, pain and the support of many team mates to make it happen. As a very kind man and former big-league pitcher told me, "you can't worry about tomorrow's game. You have to take today, one pitch at a time". So true. We're in the early innings and Garrett's already thrown a strike.

Jessi finally fell asleep next to me. She is so tender hearted. I hate that she has to worry so much about her big brother. I would so gratefully take all of their pain and carry it if I could. I pray every day that I won't fail them or God. I told Jessi we'll run the horses in and try to get them legged up while we're here so she can start rodeoing this summer again. That brought her spirits up. She'd rather be horseback than anything else. The ponies are great therapy. She can keep Garrett's horse tuned up, too for when he can ride again.

This split family situation will take some getting used to, I can already see that. I already don't like it. I have so much respect and admiration for the troops who have to leave their families for a year at a time. The deserve all the prayers we can send them, and their families here at home.

Better sign off for now. We've said our prayers in hopes we'll land on our feet in the morning and bring glory to God through our journey. Garrett's biopsy surgery is now scheduled for later in May. That procedure will tell us a lot. Until then, it's a waiting game interrupted by bi-weekly hospital visits, blood tests and check-ups. Our tough little cowboy has yet to ask "why me". His is my teacher. I'm so grateful for the blessings and gifts I've been given and certainly don't deserve.

Be blessed this week. Every day is a victory, and victory awaits the warrior.

JD

One Week Into The Fight - April 18

Garrett finished this round of treatment yesterday afternoon. He was really feeling tough but was a little better by nightfall. We celebrated our new found "freedom" from the hospital by having a slumber party with the four of us in the basement of my sis-in-law's place where we will build our fire for the next few months. We threw mattresses on the floor and everybody curled up together...sort of. We have to be careful because Garrett still has a pic-line in place. I'm hoping they take it out this week. The fear of infection is a little much. I stayed awake most of the night, it seems, going over and over in my mind how I missed the signs that he was getting this sick.

We woke up this morning and took our coffee out back, drinking in the beautiful spring day. Sure is a different morning than one week ago today. We've come far in such a short time, and our God in Heaven has calmed the waters.

I do want to caution everybody, though. The transplant staff reiterated yesterday again not to get too "excited" about our progress. This is still very early in the game and history has shown then that it's frequent for kids this sick to have severe setbacks. So we'll pick a steady pace, but have to remember who they're dealing with. This boy has beaten the odds so many times, and has more fight than anyone I know. They even talked about it yesterday, remembering Garrett as a baby. He always scared the heck out of them, but he refused to ever quit. That's why we're so positive about our chances. We know our boy!

We have a visit planned for today, from some kind folks with the Western Wishes Foundation. That organization has been so supportive of Garrett over the past few years. They survive on a shoestring, but manage to help "cowboy kids" all over the country who are sick. They are writing a chapter about Garrett's story in their 15th anniversary book.

I wish we could all go to church today, but can't afford to be around crowds of people. So for those of you who make it, please put in an extra word for us today. Thanks!

Thanks for all the prayers and support. We know how blessed we are, and we continue to pray for wisdom and grace to accept God's will.

JD