Through the Valley of the Shadow of Death. childhood cancer ~ Sample file. by Sandi Queen

Transcription

1 Through the Valley of the Shadow of Death ~ one family s journey through childhood cancer ~ by Sandi Queen 2009 by Queen Homeschool Supplies, Inc. 168 Plantz Ridge Rd. New Freeport PA

2 For my family...who lived this story through God s boundless grace For my Lord, Jesus Christ, for providing every good and perfect gift... even the gift of cancer For Sharon, for the introduction to a better way And for Jan - a mighty tool in God s hands 2

3 Dear Reader, Though I have written over 200 books, this book was by far the most difficult for me to write- and also the one I wish I never had opportunity to write. Though my family lived through the story you are about to read, it was not something I really wanted to revisit as I looked at my journal entries of the previous five years; for this is the chronicle of the most difficult trial our family has ever faced - the story of our youngest child s diagnosis and subsequent battle with cancer. And yet, I knew the Lord had allowed this trial into our lives for a reason. Romans 8:28-29 tells us, And we know that all things work together for good to them that love God, to them who are the called according to His purpose. For whom he did foreknow, he also did predestinate to be conformed to the image of his Son, that he might be the firstborn among many brethren. Yes, the Lord had a purpose for our son s cancer diagnosis and suffering. Even if we didn t understand what it was, we knew we could trust His promise that ALL things work together for GOOD, because we loved Him, and were called according to His purpose. We also knew that He would use this trial, if we did not stand in His way, to conform us more into the image of His Son, Jesus Christ. Through our childhood cancer journey, we would learn to lean on the Lord as never before in our Christian lives - for strength, for comfort, for purpose, and for direction - and to do it without fear, knowing that He would be with us every step of the way, like David testified in Psalm 23:4, Yea, 3

4 though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me. Yes, sharing the story of my little boy s cancer journey is the most difficult thing I have done up to this point in my life - except for actually living through it. And yet, like living through it by leaning on the arms of my Savior, it is also the biggest blessing I have ever received; for, as you will see, God was, and continues to be, faithful, loving, and sustaining in the face of any trial. Yes, as the popular saying goes, God is GOOD! No matter what the journey, no matter what the outcome. I pray you will be blessed as you read just how good He has been to us - even through the valley of the shadow of death. In Him, Sandi Queen, Author December

5 The Entrance to the Valley We know what Jeremiah has, and we are sure. I can still hear clearly the words of Dr. Andrea Orszy as she sat across from us at a large table in the consultation room at Children s Hospital of Philadelphia, where we had come three days earlier, arriving by ambulance with our three year old son. The tissue box strategically placed across from my husband and me as we sat in our assigned chairs, she went on to tell us the rest of what they were sure of. Pre-B Cell, Acute Lymphoblastic Leukemia. It is cancer of the blood. This type of childhood cancer is one of the most common, and also has, statistically, one of the highest cure rates - but remember, your son is not a statistic, he is an individual - and nothing is guaranteed. He could be one of the eighty percent that survives. Or, he could be one of the twenty percent that does not. We won t know until the end of the journey. Those words were not very encouraging, but they were our introduction to what lay ahead. Our lives would never be the same from that moment, nor would our sense of normal be what the rest of the world perceives as such. We had entered a place where no parent ever wants to be - the childhood cancer ward. The pages you are about to read include copies of my journal entries over the course of Jeremiah s cancer journey. I have not just cut and pasted journal entries into this format, however. There is much that has been 5

6 added and expounded upon as I look back on the events of our lives during this time, as well as much that has been deleted - such as lists of gift items and prayer requests from the past, as this book originally started as an online journal meant to keep family and friends updated on our son s continuing progress while we were in the hospital seven hours away from home. Though thankfully, the journal entries that follow are past, I have left them written in the present tense, so that you can better get a feel for what it was like for us day by day, as we lived through these events in the present tense. I pray that the Lord will use these events to show forth His goodness in our trials that, through Him, you might be sustained through yours. 6

7 Monday April 25, 2005 The beginning... On April 19, 2005, Jeremiah was diagnosed with Pre B- Cell Acute Lymphoblastic Leukemia. For weeks, he had been suffering from a fever and bellyache. We took him to the hospital about four weeks before diagnosis, where they thought he had tonsillitis or strep throat, and put him on an antibiotic. He seemed a bit better the following week, but the mother in me could not shake the feeling that something major was wrong. The paleness in his mouth area, with his lips the same color as the rest of his face, persisted, even once his fever waned. Two weeks later, we were at a convention in Pittsburgh, and Jeremiah woke up with a fever and bellyache again. 7

8 No gastrointestinal symptoms at all - just the pain. He was very pale (we now know this was indeed the anemia I suspected all along, which is common in leukemia patients), and extremely weak and lethargic. We knew we had another convention the following week, so we took him to the pediatrician for the "once-over" before leaving for our trip to Pottstown, PA. I asked for bloodwork, noting that he had all the classic symptoms of leukemia, but the doctor thought he probably had just a virus, and said to keep an eye on him for the weekend, and bring him back Monday if things didn't look any better. We never made it that far. As the weekend in Pottstown progressed, Jeremiah looked worse and worse. He would not eat anything at all, and would not even walk. He slept in till noon, which is not all that abnormal for him, but he also fell asleep for several hours in the middle of the day, and went to be early - both uncustomary for him. He looked more and more pale, and his skin seemed very yellow. We decided not to wait until we got home to take him to the doctor. As soon as my last speaking engagement was over for the day, Keith took Jeremiah and me to Pottstown hospital, and went back to finish out the convention with the other kids. We expected that he would come and get us when it was over, in a couple of hours, and that we would soon be on our way home. We were wrong. 8

9 At Pottstown, they drew blood - a lot of blood. Because he was so dehydrated, and his veins were so little anyway (he was only 28 pounds at this time), they had a hard time getting a needle into his vein. They brought in IV's It took ten tries to find a vein, which was finally found by the RECEPTIONIST, who, in his excitement, knocked the needle OUT and had to start all over again. They brought in reinforcements. They gave him a teddy bear, and looked wistfully at him. We knew something major was wrong. Finally, the doctor came in to tell us that his blood counts were all WAY off, and that they were transferring us by ambulance to the Children's Hospital of Philadelphia. I called Keith at the SEARCH convention, and he and the kids packed up and came to the hospital, where they followed us in the motorhome as we rode in the ambulance. During the ride, Jeremiah was so out of it, he didn't even know where he was. The paramedics gave him another teddy bear. He didn t even notice it. When we arrived at the Children's Hospital of Philadelphia, they immediately started drawing more blood. They moved us up to the third floor - the oncology floor - the CANCER floor -and started his nonstop rounds of IV antibiotics, "just in case he had an infection in his blood." They did not say the word "leukemia" at this point, but I 9

10 had suspected it all along, and was expecting to hear it. I had an uncle who died from leukemia when I was a child, and knew the symptoms well. On April 19, it became official. Jeremiah had Pre B- Cell Acute Lymphoblastic Leukemia. This is the most common type of childhood cancer, and, thankfully, the one with the best cure rate. Though, we are not resting in a "cure, for even if the doctors pronounce him "cured, we will know that he is instead "healed" by the mighty hand of God. Whether God chooses to heal Jeremiah supernaturally, or through these doctors whom He made and imparted wisdom to, it will be by His hand, by His choice, for His glory. Resting in the fact that He is in control, we rest assured. Chemotherapy started that evening - an injection into the spinal fluid as they did the spinal tap, then some oral medications that we are becoming too quickly familiar with. His fever started going down after the first night on chemo. Whether or not that meant anything, it made us feel like the leukemia cells, which caused the fever, were being killed off in the battle. Tuesday, April 26, 2005 The first two nights consisted of round the clock every 15 minute needle pricks, testing his blood, transfusions of 10

11 blood and platelets, injections of chemo, temperature and blood pressure monitoring, and sleeping with one hand with an IV tube taped around a padded block, so as not to move the hand and knock the tube out, and the other arm with an IV tube at the elbow, stuck in a straight, hard cover to keep it from bending. What's a three year old to do when they cannot move either hand or arm, are too weak to walk, and are hooked up to tubes and monitors attached to the wall and a portable pump? Thankfully, Children's Hospital of Philadelphia (CHOP, from here on in) has that covered with a library of books, DVD's, and videos on the 8th floor, which can be borrowed by patients, as well as a tv and dvd player in each room. For the first week and a half, and even now, Jeremiah has been afraid every time somebody walks in the door - because so far, every time somebody has walked in the door, it has meant one thing - PAIN! But, now, he's becoming a seasoned veteran, and let Dr. Fisher listen to his chest tonight with no screaming. He even let nurse Sarah take his blood pressure without tensing up! When we first got here, Jeremiah had to have a spinal tap and bone marrow aspirate to see how far the leukemia cells have spread. They put a numbing cream on his lower back that supposedly numbed him enough to inject another numbing drug into his spine, then gave him morphine to cap it off. Even after the fourth vial of morphine, it was hard for me to hold him still enough for 11

12 them to pull the marrow from his bones and chip off a section for biopsy, and he issued constant guttural screams at the doctors and nurses behind his back, "Stop! You're hurting me! Don't do that!", all the while laying in my arms and making me feel as helpless as he that I could do nothing to stop or ease his pain. Some might think that the doctors who work in this field, being accustomed to such cries, are hardened enough to withstand them. I can assure you, that is not the case. For as I blinked back my tears and looked up from my position lying across Jeremiah s little body to try to keep him in the fetal position, I saw Dr. Fisher blink back his own as he called to the nurse to give Jeremiah yet another dose of morphine. Unfortunately, he had already had the maximum allowed for his weight, and it did not touch his pain. It turns out that morphine is not an effective pain reliever for everyone. Jeremiah is among that group. Today, he had another spinal tap and bone marrow aspirate - with one difference. They had mercy and put him under general anesthesia. Still, with cancer, nothing is easy; I was allowed to stay by his side while he got drowsy on the preliminary dose of "sleepy medicine, but he was still awake when they made me leave before they put him under. As I walked out the door, I mistakenly turned to look back at him, only to see his fearful big brown eyes searching for me, and his little arm reaching out for me as I was ushered out of the room and the heavy double doors shut between us. I stopped by the bathroom to compose myself before heading to the parents' waiting 12

13 room. As hard as things are in dealing with this, we know God is at work in our situation. Yesterday, I folded the someone s laundry from the dryer in the laundry room, and put another person s laundry into the dryer so I could use the washer. When I was finishing up, a lady walked in and saw me, and said that it was her laundry which I had just folded., Her son was in trauma, and she had forgotten all about her laundry because her son needed her. I told her it was no big deal, that somebody else had folded my laundry the week before. People look out for each other here. That's just the way it is on the cancer floor in a children's hospital. I met the "laundry lady" later, in the nutritional area (snack room on our floor). She thanked me again for folding her laundry, and told me how her son, Jonathan, who is 18, was dying of a brain tumor, and that he was not expected to make it through the night. I promised to pray for her son, and she promised to pray for my son. It was nice to find a sister in the Lord in this dark, dreary place. We've had a lot of visitors since we've been here, some known to us, most not known until they've come. Since we sort of got "stranded" here from the other side of the state, it seems that everyone we know who has a friend in the Philly area, and every customer we've ever had within a three hour drive of Philly, has dropped by to visit. This has 13

14 been such a blessing! Since we are so far from home, we have not had our "family support team" coming to uphold us (though our dedicated pastor drove the seven hours to visit last Wednesday night, slept in his van in the parking lot, and drove home the following morning), it's been uplifting to see how God has sent so many of our unknown brethren to come and pray with us, bring us food, and offer their fellowship every single day. We have never felt alone, even though we are far from home. Jeremiah has the most colorful room on our floor (well, it's actually the only one I've been in, but it sure is full of color!), what with all the beautiful cards and drawings that children whose parents have come to pray with us and visit have made him. During today's bone marrow and spinal tap procedure, while he was under anesthesia, they inserted a picc line. This is a tube that goes inside his vein in his arm, from his elbow up to his shoulder. It is a place where they can both administer his transfusions and chemotherapy drugs, as well as draw his blood. It will give him the ability to move his hands freely, as well as avoid the possibility of more IV insertions - at least until we leave this hospital. He had another dose of vincristine tonight, a powerful drug that will destroy skin and underlying tissue if it comes in contact with it - scary to think of injecting that into our 3 year old's veins. Vincristine is known for, aside from killing leukemia cells, two things: causing hair loss, and constipation. Chemo patients usually crave salty foods, and shy away from sweet things. Jeremiah wants only goldfish crackers, Doritos, and meat (with ketchup, of 14

15 course!) The other day, Haley (12), who is staying here with Jeremiah and me, and I walked all over the hospital with Jeremiah, looking in vending machines for goldfish crackers, but all the machines were OUT! I guess the other cancer patients all have the same cravings. Imagine Jeremiah s joy when Dad and his other siblings came back from a convention in Maryland today with a whole box of goldfish crackers! The hair loss is something we will soon experience, as he has been on chemo for seven days now, and with vincristine, it usually takes about two weeks to start losing hair. As I washed his hair this morning with a washcloth, I cradled his little head in my hand, looking wistfully at each strand, combing my fingers through his shiny brown locks, wondering when they would fall out. Part of me actually looks forward to seeing it fall out, as it is an outward sign that inward things are happening, and that the drugs are doing their job. Wednesday, April 27, 2005 Thou he slay me, yet will I trust in Him. Job 13:15 Well, God is surely either testing our faith, or wanting us to draw closer to Him. This morning, we got the results of yesterday's bone marrow aspirate and spinal tap. The bone marrow of a leukemia patient is classified in one of three levels: M1, M2, or M3. The higher the number, the higher the 15

16 level of blast (leukemia) cells are in the marrow. When we came here, Jeremiah was classified as an M3. After a week of chemo treatments, the bone marrow taken yesterday remains at a level of M3 - meaning that Jeremiah has not yet responded to his chemo treatments. Because of this, he was classified as a late responder, which alters the whole course of his treatment protocol, and intensifies its severity. I pray that this will turn around, that God will use these medications to heal Jeremiah from his leukemia - and that He will sustain us all during the next week, as we wait on the edge of our seats to see what next Tuesday's bone marrow and spinal tap procedures will show us. We know that the Lord is in control, and has put us in the middle of this situation for reasons that only He knows. Pray that we can just trust Him, rest in Him, and give the situation over to Him - for His ways are best. Thursday, April 28, 2005 I got a call from my friend Michelle today, whose children all have a hereditary colon disease, one of whose has progressed to cancer. We had a heart to heart talk, and she gave me some good pointers on being the mom of a child with cancer. One of her tips was to NEVER Let a student work on my child! Since we are in a teaching hospital, we've had lots of student doctors and nurses coming in with the regular 16

17 doctors and nurses, and I had not been too concerned about it - BUT, then, this afternoon, as we were coming back to the room from the upstairs library, Jeremiah's pump (a pump on a pole, which pumps his IV's into him) started beeping. As we came off the elevator, I asked the nurse (I didn't know she was a student) to check it. She messed it all up, got air in the line, had blood coming into the lines almost all the way up, and generally made me feel VERY uneasy. So, I asked her to go get the nurse, who came in and fixed it all up. Whew! We didn't need that! Anyway, the trip to the library that we take usually twice each day seems to be Jeremiah's solace - his "shelter in the time of storm, if you will. Since we are on the 3rd floor, and the library is on the 8th floor, it is a place where, unlike the playroom on our own floor, the nurses cannot find him to poke him, and the only place he seems to truly relax here in the hospital. We can only take out one DVD and three books at a time, so we go often - since they have to be returned daily - and he enjoys his time there. Yesterday, he finally enjoyed playing for a short time. Our friends, Mike and Nancy Miles, sent him some toy dinosaurs yesterday, and last night we spent almost two hours playing with them - pretty much the first day he's really played since we've been here. No big medical news today; we are just continuing with chemo as planned until next Tuesday, when he is scheduled for the next bone marrow aspirate, which will tell us how things are progressing. 17

18 Friday, April 29, 2005 In the world ye shall have tribulation; but be of good cheer, I have overcome the world. John 16:33 The words of Jesus, above, are our comfort. Yes, having a child with leukemia who is not responding to chemotherapy is a tribulation. BUT, Jesus tells us to be of GOOD CHEER, for He has overcome the world! Even though some think we should be at the bottom of the pit of despair, we really are not, because we are trusting in the Lord to overcome this tribulation for us, and to use it for His glory - so, can we truly say, hallelujah! our child has leukemia!'? NO, BUT, we can say with sincerity, 'hallelujah! Our Lord will OVERCOME the tribulation of leukemia!' For though the diagnosis of cancer in our child is a BIG thing, God is bigger yet. He created Jeremiah, and He allowed this leukemia to happen for a reason. We believe we are seeing parts of that reason every day here in the things we have seen God do since Jeremiah s diagnosis. We've seen our family come together in a way like never before. We've experienced an outpouring of tremendous love and care from God's people that we have never met before, who are our brothers and sisters in Christ - we've been ministered to and cared for like never before - and mostly by total strangers. There are so many things that have happened since we've been here to really show us how God is using this situation and caring for our family in the 18

19 midst of it. And we continue to trust Him. No new medical news today, except that Jeremiah's ANC (absolute neutrophil count - immune system marker) is finally UP for the first time since we came here - does that mean anything of importance? Well, as far as progress is concerned, I'm not yet sure - but it meant today that he got to go around unplugged from his constant companion - the portable IV pump - for several hours! This meant we could walk to the playroom, and even the coveted LIBRARY without dragging a six foot tall pump on a pole with wheels! Earlier today, Jeremiah had to have a transfusion of packed red blood cells - his hemoglobin was down from the normal to 7.9. This is critically low. As I am told, chemo "messes with your counts" in a major way, and the counts fluctuate all the time. So, while some levels were down and needed to be transfused, we were happy about the ANC count going up to a normal range for the first time since we've been here. We got some surprise visitors today, all the way from home. Our friends Deanna, Dylan, and Bobbi Jo made the long drive just to see Jeremiah in person - and found us, of course, in the library! It was great to see them, and to get some hometown support firsthand, even though we know that folks back there are praying for us fervently. SPECIAL THANKS to all the wonderful ladies from Dr. 19

20 Alberta Wilson's Sunday school class at Beulah Baptist Church, who have been bringing us yummy dinners every night this week - what a tremendous blessing! We've had Jeremiah's favorite, chicken, several times this week, some of the best seafood chowder we've ever tasted, and some terrific beef vegetable stew that enticed Jeremiah to eat vegetables for the very first time since we've been here - a major accomplishment! Again, God has met our needs for meals through these wonderful sisters whom we have never met before - and we appreciate them more than we can express! And we appreciate everyone who is praying, and every other pastor and friend who came to pray with us for Jeremiah - we know that God is listening where two or more are gathered together and asking in Jesus' name, and we are trusting in the answer to come! Saturday, April 30, 2005 "The Lord is my light and my salvation: whom shall I fear? The Lord is the strength of my life: of whom shall I be afraid?" ` Psalm 27:1 Today was a bit of a slow day around here. Jeremiah had a rough morning, not feeling well, not wanting to walk, just be carried. I forced him to walk to the playroom, but he cried all the way. I know he needs to keep his legs moving, to keep them limber, or he will need physical therapy. He says his heels hurt. He is a smart little guy - he does not want to put his slippers on now when I ask if he wants to go for a walk - he knows if he has his slippers 20