Prayer Report: Lord's Day 21

Andrew was released from the hospital on Day 30 of Bone Marrow Transplant this past Friday. He still hasn't made it all the way home to his own home and bedroom but he is free from all the IVs and machines. He is free to walk around as he pleases and can sleep in peace. He spent 40 days and 39 nights in the hospital after 11 days of trips to the hospital for radiation treatments. This all began the first week of April when his relapsed was confirmed. His treatment began immediately and eventually led to another initial stage of intensive chemo therapy treatment to get his raging T-Cell Leukemia back into remission. He is now beginning in earnest his new life. He is far from finished with his journey. His new bone marrow has ingrafted and is producing but his new immune system is a long ways from adjusted or developed. He is very weak and fatigued. He is still at risk for complications and relapse. These are the realities. They aren't just "possibilities" but are daily risks that will require multiple trips every week to the cancer clinic in order to aggressively monitor his recovery and growth. However, his Leukemia treatment is over! No more Chemo! No more radiation! No more regularly scheduled procedures and spinal tap treatments! He is no longer being "treated" for Leukemia. He is doing great for this stage of the process. We praise God for this moment. What does this mean? He has transitioned from a 12 to 24 hour cycle of waiting and watching to see if a critical or life threatening complication is going to arise to now watching daily and weekly to see if the short term success will last another 70 days or so. He fought through the treatment and the first 30 days of transplant and he is still alive. Success at this stage was far from a given. We celebrate this moment!

The old adage "you don't know what you don't know"  most certainly applies to Andrew's battle with a bone marrow transplant. We can't really explain it properly and it is impossible for those on the outside to even imagine how hard it is on the patient as well as the family. I'm not sure how any of the families survive this trial. I'm not convinced at this point that we have actually survived. The only thing certain at this point is that Leukemia changes everything and not one aspect of your life is left untouched or unchanged. The experience is almost always the opposite of what you expect. The immediate days after leaving the hospital are often the worse days emotionally and the most stressful. In the hospital is hard physically but it is at least a lot less stressful that life in the real world. You expect it to be a time of great celebration but in reality it is a time emotionally crashing. We call it Post Traumatic Hospital Stay Syndrome. Yet, through it all we find the reality of God's matchless grace always being sufficient. The smiles and joys are genuine and they are so special precisely because the dark hours are so real and beyond description.  Life doesn't stop and God provides the strength and perseverance to press on without you even realizing you are being strengthened. You press on in repentance and devotion. You cry out for renewal and He provides according to His promise and His steadfast love. All the while you are learning by experience all that God teaches us in His word.

Dispatches from Andrew

We're Back! Andrew sort of has his voice back now and tomorrow will be his first benchmark on his 100 Day Journey as tomorrow will be Day 30! You can listen to the podcast HERE

Prayer Report: Lord's Day 20

This week has been very draining yet positive. Andrew is finally trying to turn the corner on his road to recovery. His new Bone Marrow is developing very well. His counts are better than they have been since he was diagnosed. His doctors and nurses are very pleased with how he is progressing. He is approaching his first benchmark which is the 30 day mark. His doctors are now starting to discuss what steps need to be accomplished in order for him to come home. He is still struggling with the sores in his mouth and the pneumonia is naggingly hanging on. But, he is getting better on both fronts. He has gotten out of his room to walk laps for the first time in awhile. He hasn't been able to easily drink or eat yet but has started to drink some shakes and he has been taking his medicine by mouth. He is taking less pain medicine and using less oxygen. He still gets very tired and the pain does catch up to him a few times a day. Coughing causes significant pain and he coughs a lot due to his pneumonia.
Prayer Points:
The sores will get better so he can eat.
Pneumonia will clear up
He can come home
Bone Marrow will continue grafting.

Prayer Report: Lord's Day 19

   This Lord's Day will mark day 18 of transplant. All of Andrew's doctors are very pleased with how he is progressing. His counts are starting to build up slowly. His lungs appear to be healing up and so far he doesn't have any signs of complications. The suffering Andrew is experiencing is easing up only slightly at times but he still has a time or two everyday where he has an extended period of coughing which is excruciating for him.  The other times of the day he is primarily resting and he feels like he has a bad case of the flu. The suffering he is experiencing is from the mouth and throat sores. The best description we have been given to this point is that the skin of his throat and other places is essential shedding or peeling. He has moments when he can't even talk because of the pain. He is spitting up bloody mucous and filling up multiple containers a day. However, the pattern and tests seem to confirm the belief that the blood is primarily from the sores and his low platelet count.
     He is tired of it all as you can imagine. However, his spirits are still up. He gave his nurse a special gift of an electric shock pen. I still can't believe she fell for it. She shrieked at the top of her voice. This is not the first time she has been his victim so you would think she (all of them) would learn. He is just like his mother. He is looking forward to having a visit to the EMS Helipad once he is able to get out.
     He has a few more weeks before this first phase is over, Lord willing. He and Robin are weary but being kept and sustained. The prayer needs at this point are essential the same as they have been.

1) Bone Marrow to produce effectively in a safe manner and relieve Andrew from these sores.
2) Andrew's spirits will remain high as his suffering goes from hours, to days, and onto weeks.
3) Prayer for his mother as she struggles with me taking care of our home and her babies.
4) The girls as they are effectively being raised by a single parent dad.
5) Andrew's protection from the various fatal conditions that could arise in the coming weeks as the bone marrow does start to produce.
6) The Spiritual vitality of our home and the continual renewal of our faith and love for Christ. That we (parents and children) will grow in our hunger for and pursuit of holiness.

   
In Christ,
Perry

Letters to Andrew: You've Missed Too Much

Dear Andrew,

     Son, I praise God for all of the relationships and experiences you have made and had because of your season with Leukemia. However, I want you to know the truth about what we try so hard to keep you from seeing. It pierces our soul to watch you have to miss so much of your childhood. Today you are missing the first day of school. The first day of Junior High. A big 7th grader. You have already missed the 7th grade orientation night with your friends. Finding your locker. The stress, fear, and excitement of learning how to change classes on the big hall. You have already missed two "first day of school" and the entire third grade because of Leukemia. I see it in your eyes and hear it in your voice that you too are crushed. I know how much you love Leake Academy and being at school with your friends and teachers. You were barely 3 months old when we moved here to Madden, MS. It is truly the case that Leake Academy is your home. However, the most crushing part of all is that you will miss being on the big hall with all of your sisters. It is Julia's big Senior year. We have talked about this day all the years I have been teaching at Leake. The one year that you and your sisters would all be on the big hall together. When I patrol the breeze way in between classes and your 7th grade class walks through and are getting in everybody's way and holding up the line I will not see you walking in the middle of them all. The first time Coach Ray chews your class out at break and tells you that he does not have to feed you snack...you won't be there.

     You will also be missing yet another season of Leake Academy Football. Your first year to play real football on Thursday nights and to be on the sidelines Friday nights with the team as one who is also grinding it out on the practice field. You missed Alex's and William's senior year. Now, you'll miss Rocket's and Matt's. You will miss Coach Pickens and Ray arguing on the sideline and in the field house. "My Gosh!" "Would you just..." "Can we not..." and all your other favorite lines of the sideline show. And possibly your favorite of all time, you will miss pre-game and holding the door for boys as they leave our field house to go do battle on the field and when they return from the field to welcome them back home win or lose!
    I am so sorry that you have had to miss so much of the treasured joys of life. It is true that God's grace is sufficient and he has blessed you and us beyond measure through this trial.  But praising God doesn't mean denying reality. It doesn't mean suffering is any less or not real. In fact the opposite it is the case, the deeper the heartache the truer the joy he gives. He doesn't remove the fire but he strengthens you, helps you, and upholds you with his righteous right hand in the fire. He doesn't exempt you from affliction but keeps you from being truly crushed in the affliction.  Sometimes the absolute worse way that we can honor God is to act like the soul piercing affliction we are experiencing through the heartache and trial is anything less that utterly soul threatening and destroying if it wasn't for the wonderful and matchless grace of Jesus. I do not have the words to express to you just how much your momma is going to miss taking the last first day of school picture with all four of you in school together.  I too am going to miss you deeply in the hallway. But I will still see you. I will see you in the faces of all your friends and all of your heroes.

Love,
Daddy

Prayer Report: Lord's Day 18

     It is Saturday August 4 and tomorrow is the Lord's Day and it will  the 18th Lord's Day since Andrew's relapse and Day 11 of his bone marrow transplant. Wr shared last week about his increased suffering due to the normal development of mouth and throat sores from the transplant process. His suffering eventually subsided a little bit and he did become a little more restful but he is still suffering and unable to eat or drink. The Dr is very pleased with his progress and overall condition. He is still in the stage of sickness as he awaits for his new marrow to begin producing. He has been confined this week basically to his room due to contracting the common cold.  He is able to get out if he's willing to put on all of the hazardous material gear (that's my name for it) which he absolutely despises. So, he is only getting out with the physical therapist to do some walking. He has had to receive various blood products almost everyday and most of the time he is basically just miserable. However, we do want to stress that so far he is only experiencing normal and expected difficulties.
     He has also had a week of heartache and the reminder of sober realities. We lost two 3C patients this week. One was a now longtime friend of Andrew's. He was a fellow leukemia patient who had relapsed around the time that Andrew was diagnosed. He was an older teenager who taught Andrew the ropes of being a leukemia patient on 3C. The other was an older girl who Andrew only really knew through our relationship with her and her parents but they had spent many appointments in the Clinic and a few weeks on the floor together. Andrew has lost more than his share of friends these past four years. But not since Campbell Dale has he lost someone as close as Freddie was to him. And yes, he is old enough for it to be a direct reminder to him that he may not live himself. And why do I talk so much about the 3C life? Because it wasn't until a visit from his 3C nurse Ms. Elaine that night that he was able to calm down and finally be at rest and comforted.

Prayer Points:
1) Bone Marrow to produce effectively in a safe manner and relieve Andrew from these sores.
2) Andrew's spirits will remain high as his suffering goes from hours, to days, and onto weeks.
3) Prayer for his mother as she struggles with me taking care of our home and her babies.
4) The girls as they are effectively being raised by a single parent dad.
5) The First Day of school and the great possibility that Robin will not be able to be there for the girls and for Julia on her last first day of high school. Taking the first day of school picture is one of Robin's greatest joys. For those unaware, I teach at the school and this is the biggest reason for difficulty. His condition at this stage doesn't allow for others to be able to easily watch him for us and his condition at that time may not allow her to be able to be away.
6) Andrew's protection from the various fatal conditions that could arise in the coming weeks as the bone marrow does start to produce.
7) The Spiritual vitality of our home and the continual renewal of our faith and love for Christ. That we (parents and children) will grow in our hunger for and pursuit of holiness.

     Robin posted this old picture from a Lord's Day past. Oh, the wonderful and matchless joy of the Lord's Day!

     Leukemia (any great trial) touches every aspect of life. There is not one part of our family's  routine or yearly traditions that is not being altered or even sullied by this battle. The daily grind is weary. We do not experience a single moment of everyday in which our lives are not being impacted. We can't even enjoy our pets because of the burden of caring for them. It only takes one minor failure or change of plan to occur for the stress of everyday to be exasperated significantly. Yet, the Lord's grace proves sufficient. Nonetheless, the battle rages. I am truly grateful to hear people express encouragement from our faith. But it also pierces my soul because I know how the sinful attitudes and desires do still rage. How quick an out burst of wrath can be kindled. How easily an attitude of disdain toward others can be nursed. And how abundantly clear that sinful weaknesses still reside in this jar of clay. And NO! These are not excusable nor acceptable because of a trial. So, pray for our spiritual vitality and protection. And may we all have the simple desire that Andrew expressed this week when he asked, "can I have one of the bibles like your bible class uses? Can you bring it to me today?"

In Christ,
Perry