Day 81: Sometimes You Have to Steal Home

Andrew has had a good weekend. Although clinically he has not particularly improved, He has felt better than he did throughout the week. We’ve had a great time watching the Diamond Dawgs (Thank you ROKU) and he has been able to sit up in the bed throughout the day without having to move from High Flow oxygen to his Bi-Pap machine. He is able to have a liquid diet to the extent that he can handle it. So, he came up with the idea that he could “lick” some cheese dip, ranch dressing, and comeback sauce. His momma is embarrassed but he and I have no shame. He was more satisfied to say the least. However, when the day comes to an end. The processes of  changing sheets, getting cleaned, taking meds, and changing clothes routinely brings us all back into reality. Andrew’s lungs are just severely compromised at this point. He simply cannot breathe on his own.  He is essentially on the most oxygen he can be given without using the Bi-Pap or a ventilator and he can not maintain his breathe to simply change his shirt. If he has to remove the oxygen source for any reason, then his oxygen levels begin to plummet almost immediately.

The Condition: 
What we know is that Andrew as been fighting with two issues this week. First, He has developed a pneumonia of some kind. Secondly, He has a chronic condition of Lung Dysfunction/Disease. More precisely, he has post Bone Marrow Transplant Lung Disease. Basically, his lungs are damaged/diseased from 5 years of fighting leukemia.
What we don’t know yet is how is he going to finish this immediate battle so that he can press on forward to keep fighting his war with Leukemia.

The Good News:
Andrew hasn’t been getting worse. This isn’t a naive sentiment of finding the silver inning. He has been receiving treatment for bacteria and fungal pneumonia and he has not gotten any worse up to this point. This is significant. If it is the case that he is healing himself and these meds are working, then he can recover. It will be an even slower process than what the past 81 days have been but it is genuinely possible.

The Bad News:
The daily limbo of not getting worse but also not getting any better eventually becomes as dangerous as getting worse. If Andrew doesn’t begin to show clear signs that he is getting better in the coming days, then that will be a sign that something is not being treated or being missed. The reason we don’t have more specific information at this point is because doing further testing will be dangerous for Andrew. To be more aggressive with diagnostic testing could turn out to be fatal for Andrew in his condition. If he continues in this pattern of not clinically getting better, then to not do the tests would be to stop #Grindin and quit the fight. The same as giving up!

The New Routine: 
So, every morning tests and diagnostics are being done and around 9-10 o’clock we are deciding with the doctors whether it’s time to “steal home” and run the tests. In baseball, stealing home is one of the riskiest plays. Very few can pull it off and rarely is it even tried outside of little league. But, he is either getting better or he is not. If he is getting better, then we give him time to keep fighting. If he is not getting better, then we have to chose to fight for the win or to quit fighting. There is not a test for the doctors to run to tell them that it is time to make that the decision. Experience. Wisdom. Training. God’s gracious guidance.  These are all that are left. He will either be getting better or not. If he is not, then we have to chose whether to fight to win or to quit. We have reached that stage of the game. And this much I know, when you have a Jake Mangum on third base or Big Andrew McCall in the PICU bed you steal home if have too. Quitting is not an option. And when you have them in scoring position….you always have a chance. As it is often said in the halls of Batson, “But this is Andrew!”

Day 76: Why Baseball? He's Back in the PICU

Andrew's room is empty again. Andrew has been taken back to Pediatric Intensive Care Unit (PICU) today.  He has spent the last couple of days on a slow building decline with his breathing. He had to start using more oxygen and his oxygen levels continued to decline. His lungs are now showing an increase in fluid build up. He is not on a breathing machine nor is he being sedated. They are in the process of running many tests to find the cause. The suspicion is that it may be heart related and that we are back to the original problem from January with his Pericardial Effusion (fluid around the heart) We will know more within a few hours we hope.

An Empty Rm 366

So, Baseball? Why do we talk so much about baseball? Well, because you lose a lot in baseball. In fact, statistically speaking the greatest hitters in the game are still technically failures. The one sport that being a failure 70% of time can still mean you're a Hall of Fame player. A major league Championship team will have over 50 loses and sometimes as many as 70. Hence, the baseball life is the one of endurance, perseverance, and survival. You just keep fighting it out, putting in the work, and Grindin in out. This is what Andrew is doing right now. He has entered another slump. He's lost a game or two over the weekend series. But the season isn't over. He has to flush it and get back up to bat. So Andrew and The Diamond Dawgs are battling for the season. No Quit! No let up! No Whining! Just Battling every inning. #AlwaysGrindin

Open Letter of Thanks: The Diamond Dawgs Just Get it!

MS State Diamond Dawgs: They just get it and they always have!

This is a thank you letter to the baseball program of Mississippi State. I have wanted to write this letter for many years. Andrew was diagnosed on June 2, 2014 and ever since that day we have been overwhelmed by the support that so many strangers have given to him and us. We have also been touched by being introduced to a world of “cancer children supporters” from so many organizations and people. We thank them all. All of the major Universities have made at least one trip to Batson Hospital over the past five years. Coaches have visited when the teams  themselves did not. These visits are not their  responsibility and I have no intention of comparing how much this school or that  school visited. They all go beyond the call of duty and every alum of every school ought to be proud. However, MS State has been different in general and the baseball team particularly. Coach Dan Mullen brought seemingly the entire team every year and they spent extensive time playing and visiting with the kids. These were special times that went beyond the normal visits. But that baseball team! It is hard to put it into words. They visited like others did in the normal and special way that athletes and childhood heroes do. But over the years through different coaches and players there would be something different that would happen. Individual players would become invested in a child. From that player the coaches and other players would become invested. They would follow the progress of the child. They would get to know the parents and spend extra time and pay personal visits to the child. So much so that some would even become pallbearers for the children that we’ve lost.  These relationships would become far more than a hero giving some personal time. They were heroes who would become friends.

Campbell and Wes Rae

Andrew and Wes Rea

Prior to entering the world of childhood cancer I had no idea how important the time that athletes, celebrities, and others who visit these children could be for the child. I have seen the human interest stories like these in the news and ESPN for years and have always been moved by them but have never fully appreciated the impact. When a child begins the fight against cancer they enter a world that has no connection to normal childhood. Depending on the type of cancer,  they will become completely isolated from the activities of normal life. At the end of the day it doesn’t matter how hard everyone works to let the child still be a child, it is an impossible task. They don’t get to truly play sports or go to school to be with their friends. They don’t get to experience life in the way children normally do. So, these relationships that MS State baseball players have established over the years allowed kids to experience their dreams.  I watched this first with Campbell Dale. I’ve intentionally shared a picture of Wes Rea and Campbell first in this letter to demonstrate how this attitude of the Diamond Dawgs has been broader and bigger than any one child, player, or coach. Plus, the picture of the two of them captures I believe the the true depth of the impact. You can almost feel the love between the two coming through the picture. As parents of other patients, we too would be inspired and encouraged by the care and attention that the players were giving to Campbell and his family. You can see the absolute joy and love experienced by them both. This is just the way it is and it is why Campbell’s dad and I have said for years about the baseball team, “They just get it. They just get it.”

Coach Lemonis and Jake Mangum Letters

In Andrew’s case, the relationships that have developed have been unexpected and perfectly timed.  Andrew’s first birthday after being diagnosed (5 yrs ago) he was receiving birthday cards from people from all over. We received a FedEx package and it was a game worn MS State baseball jersey. Long story short, it was from the former Bulldog catcher Ed Easley. He had heard of Andrew through a childhood friend of mine and he sent Andrew one of his personal jerseys from college. Later on Andrew would get a tour of the old facilities and throw out the first pitch against that school from up north. Yes, he threw a strike! Andrew relapsed with leukemia in April 2018.  His condition required a Bone Marrow Transplant (BMT) in July 2018. The nature of a BMT is that the patient has to be completely isolated from the world for a significant amount of time and for an even longer time they have to live under great restrictions in their daily life. Andrew was a complete stranger to MS State’s new coach and their star player the summer of 2018. Nonetheless, through the efforts of yet another stranger with baseball ties in the State of MS the word was passed along to the team that there was a leukemia patient who loved baseball and MS State and was having a BMT. Then Coach Lemonis and Jake Mangum proceeded to write long handwritten letters of encouragement for Andrew. They sent those letters along with some good baseball team swag! It was at a time when Andrew was physically suffering at a level that he had yet to experience throughout all of his previous 4 years of chemo therapy and radiation. The joy and pride he experienced the day he received their package was a game changer for him. They promised him a tour of the New Dudy Noble Stadium once he was healthy. He felt included and cared for but most of all he felt connected. He could not go to a ballgame of any kind because of his condition. He knew he wouldn’t be able to go to a ballgame of any kind for a long time. So, he felt connected as he looked forward to the next baseball season when he’d be able to suit up again. It was all he could talk about while he was isolated from school, family, and friends. He would say, “but when spring comes I will at least be able to dress out with the team. I will also be able to go see Jake and the new stadium." Spring has come and Andrew can not dress out with his team nor go see  Jake and the new stadium. His life was almost lost in January and he has been in the hospital under modified isolation since January 22, 2019. The week prior to being admitted to the hospital with respiratory complications he finally got to meet Jake Magnum at a church event. Jake showed up with even more personal gifts for Andrew. But more than that,  Jake came as one who seemed to already love this boy he had never met. He spoke of the players and coaches from the team praying for Andrew on a regular basis. He talked to Andrew and not at or around Andrew. He spoke with Andrew in such way that it was as if they were the only two in the room.   He told Andrew in front of all the people in attendance that Andrew was his hero. The thing about it is that Jake allowed his heart to be so exposed and vulnerable that everyone in that place believed that Jake meant every word of it. And most of all, Andrew believed it.  The rest in some ways is just history. Jake is now simply apart of Andrew’s life. But it doesn’t stop with Jake.

2019 Signed Team Ball

Being Cole in the Back Yard

The rest of the story is that what we took as a young man’s exaggeration from Jake about the team praying for Andrew turned out to be true. After days turned into weeks of Andrew being in critical condition the connections with other players grew. A signed baseball showed up for Andrew. This time it wasn’t arranged by Jake but by Cole Gordon. Little did Cole know at the time that he had already impacted Andrew through a State scrimmage game at the old Smith-Wills stadium in Jackson that Coach Cohen put together to raise money for Blair Batson. Andrew would wear a bandanna while playing in the back yard after that day. Other players took time to sit and talk with all the patients and parents that came out that day. Assistant Coach Butch Thompson spent a lot of time talking with the parents. Connections have continued to grow through social media. Even player’s mothers have gotten in on the act. Well, the baseball season has begun and Andrew is still in the hospital and unable to walk. But he is able to watch every game through ROKU. He feels connected. It is the one thing that makes him feel like he is apart of something. Apart of a team. Players have said that they were playing for him and he believes them. He feels it. So, he wanted to give them Team Andrew bracelets so we got them delivered. Jake couldn’t meet to receive them so Elijah MacNamee came out to meet me. I began to explain to him who Andrew was and he simply stopped me in mid-sentence and looked me in the eye and said, “I know who your son is.” That was a moment that pierced this daddy to the bone. I returned to my car and broken down like a little child.
Andrew now can see his bracelets out on the Dudy Noble field and he feels even more connected. He feels like he belongs on that field. That he is hitting and striking out. That he is winning and losing too. That he has a hot hand and a cold streak. He speaks of the players like he is talking about a friend. He feels for a brief moment like he is still living!

He has a long recovery ahead of him with intensive therapy to get him back walking again. He now has focused his goal on getting out of the hospital and going first thing to see “his teammates” at Dudy Noble field.

Campbell Dale

GO DAWGS! Never doubt the impact that you have on the kids who watch you and those who you invest your lives into. And before every practice and game you remember one thing....on that day, you get to play baseball. So, Your #ChemoWarrior says to #KeepGrindin cause he is!

Andrew's First Pitch against the Team up North

Thank you,
@TeamAndrew4110

Prayer Report: Day 210 Transplant, Day 30 of Hospital Admission, Day 2 of PICU Return

February 22, 2019
Day 210 of Transplant.
Day 30 of the current Hospital Admission
Day 2 back in the PICU

    Andrew was placed back into the PICU yesterday afternoon. His oxygen levels continued on a slow decline throughout the day without any signs of improving. His chest X-ray showed a worsening from the early morning X-ray. The Bone Marrow Unit is actually not apart of Blair Batson Children’s Hospital (a story for another day) and it roughly a 1/4 a mile walk from the PICU (pediatric intensive care unit) which takes an easy 8 minutes to walk when pushing equipment. So, it was a pretty easy call to be proactive and get him back to where he could receive the extra attention. All signs at this stage point to this being an issue of fluid overload and his inability to get rid off it quick enough. His blood counts dropped some more over night so today he has been receiving blood and blood platelets. He looks good and feels not so bad. He has been extremely scared throughout the process. The long trip through hospital hallways and elevators were pretty traumatic. However, for almost 24 hours he has had visits from nurses, doctors, and medical teams who had served him for all those days he was on the ventilator. He had no idea that that he was loved so much in the PICU like he has been on 3C and the Marrow Unit. He was never truly awake before. He is feeling well enough now to trash talk a doctor who was eating a Girl Scout cookie. Andrew hasn’t been able to eat since yesterday so he basically called him a wimp for being hungry. Looks like he might be able to officially break in the PICU crew this time.

    We haven’t been posting much lately primarily because there hasn’t been anything to report. A simple explanation is that just about everything in his body right now is not working in the way it ought to be working. To help one organ you do something that hurts another organ. His recovery is going very slowly and will probably continue to go slowly. We spoke with the therapist who has worked with him the most and she confirmed to us that the process of gaining strength is going slower than normal and slower than she expected. He just isn’t gaining the strength back. He has made real gains from where he started from but they are still limited. He can create muscle tension but he can’t lift his legs or arms. He improves a little one day and then the next day he takes a step backwards. At times, his left arm responds much like what you would see from someone who has suffered a stroke.

    This is why we hesitate to say that Andrew is doing good. He is significantly better. He is doing fine in the big picture. But he is just NOT ok yet. His primary cancer doctors and nurses have coined the phrase “Andrew weird” to aid in the process of caring for him. A reminder that great doctors do not merely follow protocols or numbers but apply the protocols, research, and test numbers to the actual patient they are treating. We are fortunate to have that kind of care.

Letters to Andrew: Cancer Clinic: The Forgotten Nurses

Dear Andrew,

       I write this letter to you to share with you the letter we wrote to the Cancer Clinic nurses. I call them the forgotten nurses because they are all too easily overlooked. the reason they are easily overlooked is because they are apart of thee everyday routine. We tend to overlook the routine and daily blessings in our lives. But the Cancer Clinic nurses are actually the ones you spend the most time with over time.  They are the ones who trained me an your momma (especially momma) how to be Leukemia parents. The first week of diagnosis they came tp your rom and spend as much as an hour sitting with us and explaining the best they could in that moment what we could expect for the next three to four years. I really don't know if your mother could have mentally survived the first week if it had not been for the Cancer Clinic Nurses. Here is your Daisy Letter.

Dear Cancer Clinic Daisies,

Please accept this Daisy Bouquet as a small token of our appreciation for all that you have done for Andrew and us for four and half years. We have turned in a few “Daisy” nominations over the years but we have always believed them to be inadequate for expressing the total team work required for even the greatest of nurses and staff to do their work. So, this daisy bouquet represents our own DAISY AWARD for excellence. Nonetheless, this bouquet still fails to communicate the profound gratefulness and love that we have for all of you. We are aware that the “Clinic” can often be the forgotten piece of the treatment puzzle. There is natural attachment that occurs on the floor in the intensity of initial diagnosis that is hard to recreate in the long grind of routine treatment. However, the reality is that the Clinic ultimately spends more time giving care than any other group. So, we thank you.

  June 2, 2014 is Andrew’s date. All of your patients have a date of life change and that date is ours. We of course had no clue of how much our lives were going to change nor how much Andrew would suffer. We couldn’t imagine how the long grind of the so called “maintenance” phase would beat us all down physically, emotionally, and spiritually as year after year would pass.  But we also couldn’t imagine the blessing God was giving to us by introducing all of you into our lives. I will never forget the first time Carey entered Andrew’s room. She began training Robin to be a leukemia mom. I could tell right away that we were entering into a completely different world. I remember it being one of the first times that I began to feel that Andrew was safe. Our first tour of the Clinic produced the same result but at an even deeper level for Robin.  For the first time she began to feel like she would be able to handle it after we would leave the hospital.  Typical of Andrew “weird”, he would spend well over a month in the hospital before being released. By the time we had to start coming to the clinic we had seen almost everyone of his chemo nurses at least once. So immediately, the Clinic was HOME for Andrew. A place where he has always felt safe. So for us, 3C and The Clinic have all always been the same family.

We thank God often for the blessing of Andrew’s Clinic Team.  We think of you often. I have no doubt that none of you fully appreciate how important and special you are for your patients and particularly for us. Andrew’s childhood has been spent with you in the clinic. Some of his fondest childhood memories will forever include you. NEVER DOUBT THE IMPACT, IMPORTANCE, AND NECESSITY
OF YOUR WORK! Nor, our love and appreciation.

Thank You,
Team Andrew

Prayer and Praise: 19 Days of ICU

February 11, 2019
Day 199 of Transplant and Day 19 PICU

Praise God from Whom ALL Blessings Flow!

After 19 Days of PICU,  Andrew has been transferred back to the Bone Marrow Transplant Floor.  Upon arrival to the floor, he entered the hallway to the Theme Song for  Rocky playing. Like we say, we love our people.

He is doing well but is having a hard day of activity. Thank you for the prayers and support. We are constantly amazed at how much support and encouragement we receive from all over the place.

We are looking forward to getting the National League Championship series started soon!

In Christ,
Team Andrew

Prayer Report: Day 198 Transplant and Day 18 PICU

February 10, 2019

The Smile is Back!

Andrew’s smile is back. In fact, I think he might have even flirted a little bit this morning with one of his nurses. Each day now could be the day he transfers out of PICU back up to the 5th floor Bone Marrow Unit.

I find it hard to report on his condition right now because he is genuinely doing better and he is stable. But he is not ok yet either. He is going through the process of recovering from 14 days of essentially a medically induced comma with significant amounts of high power sedation. For most of that time he was also under muscle paralytics in order to keep him still. He has been suffering form delirium and also withdrawal  symptoms. He is proudly weak. He can not move his legs or arms in any significant way.  He was finally able to actually lift his head up and hold it straight with his own strength yesterday. He still can’t lift his arms nor himself up from the bed. To sit on the side of the bed the therapist have to hold him up. The road of recovery is going to be a different type of battle than he has yet to experience. But #ChemoWarriors Keep Grindin. Therefore, the report is that he is stable, doing better and getting better but not yet ok.

But today, he is smiling again!