I slept little last night, once again. How can I sleep when a battle of life and death is raging? And this time it was also raging in me. Not physical, but spiritual. I felt as though I were slipping into the depths of a deep dark chasm with no apparent bottom. Dense darkness engulfed me. While before I could see God’s hand with us, guiding us, seeing us through to a future and a hope, now I could see nothing. NOTHING. I felt totally helpless, vulnerable, and utterly alone, with no apparent way out. I longed to know someone was out there praying for me. I listened to the messages on my phone, just hear the voices of dear friends and family who have called to assure me of their love and prayers. Now I think I know just the teeniest, tiniest bit of what Jesus felt as He struggled in Gethsemane, longing to know His disciples were praying for Him. He had no one, but, praise God! I have an army! You have no idea how vital your prayers are to our survival through this experience, and we are so grateful for hosts of family and friends who are continually lifting us in prayer, (some even fasting on our behalf) when we cannot do it for ourselves. You are pulling us out of the pit. It is so encouraging to us to read your message of support and love. We love you all! (And in case you didn’t already realize it, your prayers are vital to your eternal survival, too. We are praying for you.)
Derek slept peacefully (well, as peacefully as can be expected when nurses come in every four hours to check vitals, and he woke up every hour or hour and a half to use the bathroom.) He awoke, happy and excited about the day’s potential. He talked more today than I think he ever has in a day before now. He had more visitors bringing him more toys. He played in the playroom again while my mom watched him and played with him. He still does not look sick, but we are fully aware that his time is coming. He is doing as expected. His white count is continuing to drop, and the doctors assure us that by next week, it will be zero. His risk of infection will skyrocket. But for now, he is still feeling pretty good. He does not complain much and does exactly what he is told to do. Of course he does not like many things that must be done, but he is coping just fine. In his mind, the positive things about being here outweigh the negatives, so we are thankful. The food renaming game continued at lunch today. Among the items on his plate were some mixed vegetables including cooked carots and green beans (which he likes) and yellow squash (which he doesn't.) The green beans became pipe fish. The squash became clown fish and went down easier if they were hiding in seaweed (lettuce). When I asked him if the cooked sliced carrots were sand dollars, he declared that they were too small to be dollars. "They are sand pennies," he said. We all laughed. Kristen was cleared to come onto the unit today and enjoyed spending a couple hours with Derek this afternoon.
Vince and I met with the oncology educator this morning. We got a crash course in how to live with a cancer patient. We learned what to expect and prepare for, what we will need to do and avoid, what to watch for, ever alert, knowing that the smallest things could lead to serious problems. We will have to make some significant changes in order to pull through this successfully. We were slammed with the realization that life as we have known it will not return for several years, even when things go very well. Resignation is setting in now. Fortunately, my mom was able to be with Derek all morning so after our education session, Vince and I had our first opportunity to sit together, talk, share, and cry together since this all began last Wednesday night. It was much needed.
Monday, September 12, 2011
Last night Derek was moved to the oncology unit. The doctor wanted him to get up and stand and walk around to prevent getting blood clots in his legs, but Derek was so weak that he just could not. The doctor had warned us that after having a white blood count as high as he had, his legs would feel really funny and weak when the count went down. This is because white blood cells are made in the long bones, such as his legs, and he almost certainly had had intense pain in his legs which he never told us about.
Monday morning he received a blood transfusion, and by the time I arrived he was walking and standing and not wanting to lie around in his bed at all. He went to the playroom in the morning with Vince and my mom before I arrived and had a great time playing with tractors and trucks which he brought back to the room when he was finished.
My mom helped him eat lunch and made a game of it. Together they renamed each item on his tray to be something from the ocean, and he pretended to be a dolphin, eating minnows (peas), seaweed (salad), and other things. He has a great appetite because of the medication he is on, so he eats pretty much everything on the tray. He is responding really well to the treatments and is perky and almost more energetic than I. In the afternoon, I took him back to the playroom, and he acted as if he had to play with all the toys this afternoon because he might have to leave and not have a chance. He does not realize that he will have PLENTY of time to play with everything in the room.
When the playroom closed, he still was not ready to settle down and sit in bed. The unit has several tricycles and cars for kids to ride, and he wanted to try them all out, acting again as though he might have to leave this wonderful place and not have a chance to try them all out. Many of vehicles were too small for him, but he found one large tricycle that fit just right. It said “John Deere” on the back, so that was even better. He raced up and down the hall narrowly missing people and objects while I chased after him with his IV stand, imploring him to slow down, and watch out for the people. He got all out of breath, and it was good to have him breathing deeply.
To add to his delight, several people stopped by to bring him special toys. It’s like Christmas in September. When asked by another mom on the unit whether he like it here, he quickly told her yes. He is blissfully unaware of the long journey ahead, and that is good. He can concentrate on being happy and getting well.
Vince and I, on the other hand, had a really hard day. As we looked around the ward at the other children with their little bald heads, a heavy dose of reality began to set in. We don’t have just a very sick child. We have a child with CANCER! Within a very few weeks, his thick dark hair will begin to fall out and he will begin to look like others with the disease they share. While Derek played happily, we were forced to stifle our tears, hide our pain for now, die on the inside only, and wait until the cover of night to let our tears flow unabated onto our pillows.
As I watched and listened to the suffering on this unit today, my anger began to grow. A boy with a brain tumor who can hardly walk; a little baby who has to receive injections in her eye every four hours for the next several days, her muffled screams piercing through closed doors; their mothers who turn away to hide their tears of very real pain, just as I. It is hellish! The thought that there is a being in our world so evil that he thinks this is fun fuels my fury. I hate him with every fiber of my being, and I cannot wait for him to be destroyed along with his horrid, evil tools of Suffering, Pain, and Death. Deliver us, oh God!
Monday morning he received a blood transfusion, and by the time I arrived he was walking and standing and not wanting to lie around in his bed at all. He went to the playroom in the morning with Vince and my mom before I arrived and had a great time playing with tractors and trucks which he brought back to the room when he was finished.
My mom helped him eat lunch and made a game of it. Together they renamed each item on his tray to be something from the ocean, and he pretended to be a dolphin, eating minnows (peas), seaweed (salad), and other things. He has a great appetite because of the medication he is on, so he eats pretty much everything on the tray. He is responding really well to the treatments and is perky and almost more energetic than I. In the afternoon, I took him back to the playroom, and he acted as if he had to play with all the toys this afternoon because he might have to leave and not have a chance. He does not realize that he will have PLENTY of time to play with everything in the room.
When the playroom closed, he still was not ready to settle down and sit in bed. The unit has several tricycles and cars for kids to ride, and he wanted to try them all out, acting again as though he might have to leave this wonderful place and not have a chance to try them all out. Many of vehicles were too small for him, but he found one large tricycle that fit just right. It said “John Deere” on the back, so that was even better. He raced up and down the hall narrowly missing people and objects while I chased after him with his IV stand, imploring him to slow down, and watch out for the people. He got all out of breath, and it was good to have him breathing deeply.
To add to his delight, several people stopped by to bring him special toys. It’s like Christmas in September. When asked by another mom on the unit whether he like it here, he quickly told her yes. He is blissfully unaware of the long journey ahead, and that is good. He can concentrate on being happy and getting well.
Vince and I, on the other hand, had a really hard day. As we looked around the ward at the other children with their little bald heads, a heavy dose of reality began to set in. We don’t have just a very sick child. We have a child with CANCER! Within a very few weeks, his thick dark hair will begin to fall out and he will begin to look like others with the disease they share. While Derek played happily, we were forced to stifle our tears, hide our pain for now, die on the inside only, and wait until the cover of night to let our tears flow unabated onto our pillows.
As I watched and listened to the suffering on this unit today, my anger began to grow. A boy with a brain tumor who can hardly walk; a little baby who has to receive injections in her eye every four hours for the next several days, her muffled screams piercing through closed doors; their mothers who turn away to hide their tears of very real pain, just as I. It is hellish! The thought that there is a being in our world so evil that he thinks this is fun fuels my fury. I hate him with every fiber of my being, and I cannot wait for him to be destroyed along with his horrid, evil tools of Suffering, Pain, and Death. Deliver us, oh God!
Sunday, September 11, 2011
Last night (Saturday night) proved to be a difficult. One of the possible side effects of one IV drug they are giving him is sleeplessness. He lay there quietly as though he wanted to go to sleep, but he just couldn’t. He finally fell asleep about 11:30 p.m. Then the nurse came in to check his vitals and give him a pill. He’d never swallowed a pill before, so that took a while and thoroughly woke him up. Throughout the night, he slept little, and very lightly.
While all his numbers were good and the doctor was very pleased with his progress, today was a hard day for Derek. He felt nauseous at times and starving hungry at others, complained of a headache, and was generally fussy. I’m sure lack of sleep contributed to it, but we are entering the second stage of a falling blood count. It is getting too low. This afternoon, they had to give him platelets and this evening they expect to do a blood transfusion.
Even though the day was tough at times, there were periods of happiness and playfulness. He dug a ditch (part of a cardboard box) with a digger they gave him and used pieces of cardboard for dirt. He laid a pipe (a twistie wire) in the ditch and covered it back in with cardboard pieces. The doctor has told him he won’t be playing in real dirt for quite a long time, so this will have to be the next best thing. The unit allowed Kristen to come in and stay through the afternoon and evening. She sat on the bed and watched videos and played playdough with him. They have missed each other, so it was good to have quality time. Friends brought a delicious supper, and for the first time since last Wednesday morning, the four of us had a meal together as a family. It was a very pleasant evening in our new reality.
A bed opened up on the oncology unit, so about 8:00 p.m. tonight they moved him to his new home for at least the next four weeks.Sabbath update, September 10, 2011
Hope. That’s what we have. On my way home last night (Friday), I turned on a CD a friend had given me for the kids. It is a Sing the Word CD. Shortly after beginning our journey home, Jeremiah 29:11 played. “For I know the thoughts that I think toward you, says the LORD, thoughts of peace and not of evil, to give you a future and a hope.”
As it played, it was as though God held out His hands and gently said, “This is YOUR verse for right now. Even though my thoughts are above your understanding, I KNOW my thoughts for you, and I will tell you what they are. My thoughts for you are peace. My thoughts are not of evil. Those thoughts are coming from someone else who seeks to destroy you, your family, and all those who are watching your situation. My thoughts for you are of peace. As proof of that peace, which you may have if you choose to allow me to fill you with it, I will promise you a hope and a future.”
I don’t know just now what that future will look like, but I think I will choose to hope and to trust that God’s ways for us are filled with peace in the midst of evil. We see that God is giving us, even little Derek, what each of us needs to get through this.
Today Derek has made tremendous progress. He has been our happy little boy again. He has totally amazed the nurses and even given us some giggles. He is stable and ready to be transferred out of ICU to the oncology unit. We are waiting for a bed to open up, but right now they are completely full. His electrolytes are all normal, including potassium. His white blood count is 9.8 which is also normal. He is responding beautifully, and he seems to feel good.
As many of you know, Derek is usually a funny little boy. He continually sends us into laughter (sometimes secretly) at the things he says. Midmorning we received the menu options for Sunday’s meals. The nurse was also in the room as I was asking Derek which items on the menu sounded good to him, I came to a dessert selection for lunch. The choices were strawberry ice cream or a chocolate chip cookie. Derek has always had a very large sweet tooth. In fact he told us once that all his teeth were sweet teeth. I believe it! Knowing he would choose the ice cream, I said, “I think I know what you will choose, but I’ll ask you anyway. Ice cream or cookie?” Without hesitation he said, “Strawberry ice cream!” I laughed and said, “I KNEW it!” The nurse joined in and told him that was her favorite, too, and asked if he would share with her. Without missing a beat, he looked at her and said, “No. I think you can probably get some for yourself out there,” and he looked toward the door.
This afternoon, he discovered that the middle line on the monitor recorded his respiration and that by changing the way he breathed, he could make all manner of squiggles and lines show up on the monitor. First he tried holding his breath as long as he could. Then he breathed out and held it out as long as he could. It made boxy shapes and sent the alarms to sounding because he didn’t have enough respirations in a minute. Then he tried very rapid breathing and liked the tiny squiggles even more. He had to try to stop him though, for fear he would hyperventilate. When any nurse came in, he was excited to show them his newly acquired artistic abilities. We were beginning to think that if they didn’t transfer him soon, he would be driving the nurses crazy. But it is SO good to hear his little giggles and see his smiles.
Finally at about 8:30 they moved him out of PICU to the stepdown unit which usually specializes in cardiac care. There are still no rooms available. But the unit is practically empty. When we arrived, Derek was the only patient on this hall and had a nurse all to himself. One more patient has arrived since, but it is very quiet. Maybe we will get some sleep.
Thoughts From a Sleepless Night - Day 2 (Friday, 9/9/11 2:30 a.m.)
Is it ok to hate a blessing?
50 years ago under theses circumstances I would be planning a funeral. It is a blessing that I am sitting here in PICU with a living and fighting son. But I hate it.
I hate the constant beeps that awaken me or keep me awake. But they mean life-saving care for my son and others on this unit. I hate that we are here at all.
I hate the painful procedures that make me have to hold a sobbing boy as tears course down both our cheeks. But those procedures are going to allow him to see another day and week and year.
I hate the chair that folds down into a cold, uncomfortable bed. But it allows me to catch a few minutes of sleep in between nurse visits.
I hate that housekeeping has to come in at 2:30 a.m., but they keep my son’s room clean and spotless 24/7 so he has the best chance to avoid further illness.
I hate the dozens of meds that have gone into my little boy’s arms and will pass through his kidneys. But they will help him fight this villain.
I hate that this has happened so fast; this is only the beginning of day 3 of even realizing that he was sick at all. But it is a blessing he hasn’t suffered more.
I hate all the tubes and wires attached in various ways to his little body. But they are monitoring him and providing access to give meds without having to poke him over and over.
I hate ignoring phone calls from friends because I just cant talk right now, knowing that the blessing of love and friendship behind those calls is going to help carry us through this dark valley.
Is it ok to hate a blessing? Perhaps I don’t hate these blessings. I think I hate needing to receive them. Is there a blessing in having to go through this?
--- --- ---
Friday proved to be a day of hope. Derek’s white blood count continued to drop throughout the day. As his potassium levels climbed, they gave him a medication to force it out of the bloodstream so it would be absorbed by the cells, thus reducing the risks to his heart. The miracle was that even though they were giving him so many fluids, the mass in his chest (which they believe to be grossly enlarged lymph nodes that have fused together) did not swell, further affecting his breathing. The rest of his electrolytes stayed pretty normal, and by the end of the day, his potassium was near normal as well. He was talking, smiling, and even laughing when his cousins came to visit. It was music to our ears and hearts.
Throughout the day we received so much encouragement from visitors. We also heard the news that friends were getting together to pray at our church Friday evening. We were totally blown away by the thought that so many people would leave their homes and dinners on a Friday evening after a busy work week and meet to pray for our precious son!
We have not had to worry for one minute about the care for Kristen. Wonderful friends have taken her under their wings and provided for her as their own children. When we have picked her up, she has been totally happy and unstressed, eagerly telling us all the fun things she did. Not having to worry about her care has been a huge blessing. Food has shown up at meal times, all orchestrated by wonderful people at Azure Hills Church. Cafeteria food does not hold a candle to your cooking!
While there is still a long dark valley ahead through which we must pass, all of this has been a river of love and support that is carrying us along. Thank you! Thank you!
50 years ago under theses circumstances I would be planning a funeral. It is a blessing that I am sitting here in PICU with a living and fighting son. But I hate it.
I hate the constant beeps that awaken me or keep me awake. But they mean life-saving care for my son and others on this unit. I hate that we are here at all.
I hate the painful procedures that make me have to hold a sobbing boy as tears course down both our cheeks. But those procedures are going to allow him to see another day and week and year.
I hate the chair that folds down into a cold, uncomfortable bed. But it allows me to catch a few minutes of sleep in between nurse visits.
I hate that housekeeping has to come in at 2:30 a.m., but they keep my son’s room clean and spotless 24/7 so he has the best chance to avoid further illness.
I hate the dozens of meds that have gone into my little boy’s arms and will pass through his kidneys. But they will help him fight this villain.
I hate that this has happened so fast; this is only the beginning of day 3 of even realizing that he was sick at all. But it is a blessing he hasn’t suffered more.
I hate all the tubes and wires attached in various ways to his little body. But they are monitoring him and providing access to give meds without having to poke him over and over.
I hate ignoring phone calls from friends because I just cant talk right now, knowing that the blessing of love and friendship behind those calls is going to help carry us through this dark valley.
Is it ok to hate a blessing? Perhaps I don’t hate these blessings. I think I hate needing to receive them. Is there a blessing in having to go through this?
--- --- ---
Friday proved to be a day of hope. Derek’s white blood count continued to drop throughout the day. As his potassium levels climbed, they gave him a medication to force it out of the bloodstream so it would be absorbed by the cells, thus reducing the risks to his heart. The miracle was that even though they were giving him so many fluids, the mass in his chest (which they believe to be grossly enlarged lymph nodes that have fused together) did not swell, further affecting his breathing. The rest of his electrolytes stayed pretty normal, and by the end of the day, his potassium was near normal as well. He was talking, smiling, and even laughing when his cousins came to visit. It was music to our ears and hearts.
Throughout the day we received so much encouragement from visitors. We also heard the news that friends were getting together to pray at our church Friday evening. We were totally blown away by the thought that so many people would leave their homes and dinners on a Friday evening after a busy work week and meet to pray for our precious son!
We have not had to worry for one minute about the care for Kristen. Wonderful friends have taken her under their wings and provided for her as their own children. When we have picked her up, she has been totally happy and unstressed, eagerly telling us all the fun things she did. Not having to worry about her care has been a huge blessing. Food has shown up at meal times, all orchestrated by wonderful people at Azure Hills Church. Cafeteria food does not hold a candle to your cooking!
While there is still a long dark valley ahead through which we must pass, all of this has been a river of love and support that is carrying us along. Thank you! Thank you!
Current Update
I will write more of what happened Friday later, but I just wanted to let everybody know that Derek is doing so much better. As of 4:00p.m. yesterday (Friday) his white count was down to 38,000 and the risk of stroke is minimal. His potassium level is normal. He is still struggling with his oxygen saturation levels at times, but it has not been critical. He is talking, smiling and laughing -- a huge change from Thursday and Friday. They will likely move him from PICU down to the oncology ward today.
We have had such an overwhelming outpouring of love and support! Thank you! Thank you! Thank you! We are being carried along on the tidal wave of your love and prayers. You have no idea what this means to us. It's surreal being on the receiving end, but we are eternally grateful to you all.
We have had such an overwhelming outpouring of love and support! Thank you! Thank you! Thank you! We are being carried along on the tidal wave of your love and prayers. You have no idea what this means to us. It's surreal being on the receiving end, but we are eternally grateful to you all.
Whiplash (written early Friday morning, 9/9/11)
It's been a very long time since I have used my blog. I guess FB kind of took over, but I think this may be the best way to keep those interested updated of current happenings.
I have severe whiplash - figurative that is. I've gone from 0 to 120 mph in just about 6 seconds, or so it seems. Two days ago I was cruising through a busy, full, contented, albeit stressful-at-times life of a mommy. Then I was hit from behind. I went from having a healthy active little boy who was enjoying swimming lessons and attending his first "big kids" science class to a little boy fighting for his very life. The diagnosis is what hit us from behind and sent us flying: T-cell acute lymphocytic leukemia.
I owe the fact that I'm not planning his funeral today to a very dear friend and physician who advised me to take him to the ER for a number of seemingly unrelated and rather sudden symptoms on Wednesday afternoon and evening (Sept. 7, 2011). His symptoms: a puffy face when awakening from sleep, shallow breathing, and a distended abdomen. Fortunately I heeded his advice. Had I simply called the 24 hour insurance hotline nurse, she likely would have recommended that I wait and take him to the pediatrician in the morning. That delay would have meant disaster.
But as we checked in at the front desk at the Corona ER at 900 p.m. Thursday night, the lady asked which one of us was being seen. When she saw Derek, she looked surprised as though he did not look sick enough to come to the ER, and he didn't. As we sat in the waiting room, his breathing problems dissipated, and we wondered if indeed we were imagining things and were just there for an upset tummy that would resolve itself with the next bowel movement. The triage nurse took down the symptoms and checked his vitals. We saw a resident, then an internist. As the internist felt Derek's abdomen, he quickly zeroed in on the very spot Derek had indicated as the site of his tummy ache. Perhaps I wasn't imagining things after all. Perhaps it was what my friend had feared: a bowel obstruction. (Oh if only that's what it could have been. How my perspective has changed.)
The doctor ordered blood tests, an x-ray, and a ct scan. After they did the second blood draw, Derek fainted. That was what got everyone taking us seriously. He immediately got a bed in ER and started getting the attention he needed. As Derek went in for the ct scan just after midnight, the results of the blood tests came back. The white blood cell count was unbelievably high - 245,000. Normal is 5,000-10,000. The doctor knew there was no infection or obstruction. We were likely looking at leukemia. He contacted Loma Linda University Medical Center Children’s Hospital who strongly urged him to transfer Derek to them immediately. We didn’t realize it at the time, but after that phone call, the LLUMCCH oncologist, Joan Morris, flew into action. She arranged for tests and treatments before Derek ever arrived so that when he did, he would receive immediate, intense care. She even sent two of her personnel in the ambulance to personally escort him. The danger, of which we were ignorant at the time, was that he would have a stroke as a result of such a high white count. There weren’t enough red blood cells to carry oxygen to his brain, heart, and lungs. The red blood cells were being crowded out by the white blood cells, hence the difficulty breathing. The risk of stroke or other vital organ failure would be present until the white count could be reduced, and that was Dr. Morris’s top priority. From the time she got the call, she treated Derek as though he were the only patient she had. Her attention to detail and her ability to organize and carry out all the procedures and care from so many specialty teams have been utterly amazing, and we are eternally grateful. At 5:00 a.m. today, Thursday, they were finally able to transfer him to LLUMC where they put him in Pediatric ICU. Dr Morris and her team were waiting for him.
Today has been completely overwhelming. We have filled a bathtub with our tears. It has been a constant barrage of information, concern, and decision making (which always involves mountains of paperwork and signatures.) So many critical things depended on other complicating factors that we felt as though we were walking on the edge of a razor blade -- extremely painful, but with devastating results if we fell off either side.
The x-ray and ct scan were of the abdomen because we were still thinking it was a GI problem. But the x-ray showed part of a mass surrounding his heart. That needed to be explored more. By late morning, he had a second ct scan of his chest. It showed the mass surrounding his heart and impinging on his trachea – another reason Derek was having trouble breathing.
Dr. Morris’ first priority was to get him hooked up to a machine which would remove some white cells from his blood. That would necessitate putting a line in his femoral artery in his leg. They also needed to obtain a bone marrow sample to determine conclusively what type of leukemia Derek had. They needed to perform a spinal tap to see if the disease had spread to his spinal fluid. While they did the tap, they wanted to insert a dose of chemo into his spine to begin the white cell destruction. In addition, they needed a safer, longer lasting access to his veins rather than a regular IV that likely lasts only a few days. They had to put in a special PICC line in his upper arm. All of these procedures are painful, but they were worried that if they sedated him, the pressure of the mass surrounding his heart would collapse his lungs. But they couldn’t put a tube in to help him breathe because removing the tube after the procedures could cause the trachea to collapse. So at first they were afraid he would have to have all of these procedures with just local anesthesia, and Derek would be awake the whole time. Nobody liked that idea, but they could not intubate him because of the risks. After discussing options with the anesthesia team, they decided to sedate him without intubating him. It was a rather precarious situation. We were grateful that Derek would not have to be awake for those procedures. The anesthesia team was prepared for an emergency, should one arise. They allowed me to accompany me him to OR and stay with him until he fell asleep. The anesthesia team were fantastic with him. They had him talking about his pets as he drifted off. Watching him go to sleep and then leaving the room was excruciating.
The procedures started just about 3:00 p.m. Then the waiting began. We were updated as the procedures were completed, but the intervening wait time seemed to take forever. In reality, it was about two hours. All the procedures went perfectly and he did well with the anesthesia. Praise God! Vince and I met him in recovery and accompanied him back to PICU.
By 7:00 p.m. they had him hooked up to the pharesis machine which would begin removing white blood cells from his blood. During this time they also performed an echocardiogram in preparation for the first round of chemotherapy, which Dr. Morris wanted to give immediately following pharesis. Again, the potential for disaster was ever present, but the pharesis nurse was fantastic and so attentive to every detail. The danger this time was that in removing so much fluid from him, his blood pressure would drop and he again would be at risk of brain damage. But she couldn’t give too much fluid for fear of overwhelming his kidneys. To complicate things further, the latest lab results showed that his potassium levels were way to high which could cause heart arrhythmia and/or damage. They had to give him Lasix to help him rid his body of this excess potassium. This meant that more fluid would leave his body, and the need to monitor input and outflow was intensified. The razor blade again. Every time he urinated, his blood pressure dropped and she had to quickly give him more IV fluids. Fortunately, he could now take water by mouth.
By 11:30 the pharesis was completed. Derek’s white count was down to 111,000. They had removed half of his white blood cells. The chemo they had given him in his spine earlier was also beginning to break down the white cells. He is not out of the woods yet regarding potential for stroke, but things are moving in the right direction.
Just after midnight, the nurse came in to administer his first round of chemo. As of now, 12:30 a.m. Friday morning, they are finished. Derek is asleep. They are monitoring his potassium levels closely.
Just 27 hours after entering the doors of the ER in Corona, look where we are now! I have whiplash.
I have severe whiplash - figurative that is. I've gone from 0 to 120 mph in just about 6 seconds, or so it seems. Two days ago I was cruising through a busy, full, contented, albeit stressful-at-times life of a mommy. Then I was hit from behind. I went from having a healthy active little boy who was enjoying swimming lessons and attending his first "big kids" science class to a little boy fighting for his very life. The diagnosis is what hit us from behind and sent us flying: T-cell acute lymphocytic leukemia.
I owe the fact that I'm not planning his funeral today to a very dear friend and physician who advised me to take him to the ER for a number of seemingly unrelated and rather sudden symptoms on Wednesday afternoon and evening (Sept. 7, 2011). His symptoms: a puffy face when awakening from sleep, shallow breathing, and a distended abdomen. Fortunately I heeded his advice. Had I simply called the 24 hour insurance hotline nurse, she likely would have recommended that I wait and take him to the pediatrician in the morning. That delay would have meant disaster.
But as we checked in at the front desk at the Corona ER at 900 p.m. Thursday night, the lady asked which one of us was being seen. When she saw Derek, she looked surprised as though he did not look sick enough to come to the ER, and he didn't. As we sat in the waiting room, his breathing problems dissipated, and we wondered if indeed we were imagining things and were just there for an upset tummy that would resolve itself with the next bowel movement. The triage nurse took down the symptoms and checked his vitals. We saw a resident, then an internist. As the internist felt Derek's abdomen, he quickly zeroed in on the very spot Derek had indicated as the site of his tummy ache. Perhaps I wasn't imagining things after all. Perhaps it was what my friend had feared: a bowel obstruction. (Oh if only that's what it could have been. How my perspective has changed.)
The doctor ordered blood tests, an x-ray, and a ct scan. After they did the second blood draw, Derek fainted. That was what got everyone taking us seriously. He immediately got a bed in ER and started getting the attention he needed. As Derek went in for the ct scan just after midnight, the results of the blood tests came back. The white blood cell count was unbelievably high - 245,000. Normal is 5,000-10,000. The doctor knew there was no infection or obstruction. We were likely looking at leukemia. He contacted Loma Linda University Medical Center Children’s Hospital who strongly urged him to transfer Derek to them immediately. We didn’t realize it at the time, but after that phone call, the LLUMCCH oncologist, Joan Morris, flew into action. She arranged for tests and treatments before Derek ever arrived so that when he did, he would receive immediate, intense care. She even sent two of her personnel in the ambulance to personally escort him. The danger, of which we were ignorant at the time, was that he would have a stroke as a result of such a high white count. There weren’t enough red blood cells to carry oxygen to his brain, heart, and lungs. The red blood cells were being crowded out by the white blood cells, hence the difficulty breathing. The risk of stroke or other vital organ failure would be present until the white count could be reduced, and that was Dr. Morris’s top priority. From the time she got the call, she treated Derek as though he were the only patient she had. Her attention to detail and her ability to organize and carry out all the procedures and care from so many specialty teams have been utterly amazing, and we are eternally grateful. At 5:00 a.m. today, Thursday, they were finally able to transfer him to LLUMC where they put him in Pediatric ICU. Dr Morris and her team were waiting for him.
Today has been completely overwhelming. We have filled a bathtub with our tears. It has been a constant barrage of information, concern, and decision making (which always involves mountains of paperwork and signatures.) So many critical things depended on other complicating factors that we felt as though we were walking on the edge of a razor blade -- extremely painful, but with devastating results if we fell off either side.
The x-ray and ct scan were of the abdomen because we were still thinking it was a GI problem. But the x-ray showed part of a mass surrounding his heart. That needed to be explored more. By late morning, he had a second ct scan of his chest. It showed the mass surrounding his heart and impinging on his trachea – another reason Derek was having trouble breathing.
Dr. Morris’ first priority was to get him hooked up to a machine which would remove some white cells from his blood. That would necessitate putting a line in his femoral artery in his leg. They also needed to obtain a bone marrow sample to determine conclusively what type of leukemia Derek had. They needed to perform a spinal tap to see if the disease had spread to his spinal fluid. While they did the tap, they wanted to insert a dose of chemo into his spine to begin the white cell destruction. In addition, they needed a safer, longer lasting access to his veins rather than a regular IV that likely lasts only a few days. They had to put in a special PICC line in his upper arm. All of these procedures are painful, but they were worried that if they sedated him, the pressure of the mass surrounding his heart would collapse his lungs. But they couldn’t put a tube in to help him breathe because removing the tube after the procedures could cause the trachea to collapse. So at first they were afraid he would have to have all of these procedures with just local anesthesia, and Derek would be awake the whole time. Nobody liked that idea, but they could not intubate him because of the risks. After discussing options with the anesthesia team, they decided to sedate him without intubating him. It was a rather precarious situation. We were grateful that Derek would not have to be awake for those procedures. The anesthesia team was prepared for an emergency, should one arise. They allowed me to accompany me him to OR and stay with him until he fell asleep. The anesthesia team were fantastic with him. They had him talking about his pets as he drifted off. Watching him go to sleep and then leaving the room was excruciating.
The procedures started just about 3:00 p.m. Then the waiting began. We were updated as the procedures were completed, but the intervening wait time seemed to take forever. In reality, it was about two hours. All the procedures went perfectly and he did well with the anesthesia. Praise God! Vince and I met him in recovery and accompanied him back to PICU.
By 7:00 p.m. they had him hooked up to the pharesis machine which would begin removing white blood cells from his blood. During this time they also performed an echocardiogram in preparation for the first round of chemotherapy, which Dr. Morris wanted to give immediately following pharesis. Again, the potential for disaster was ever present, but the pharesis nurse was fantastic and so attentive to every detail. The danger this time was that in removing so much fluid from him, his blood pressure would drop and he again would be at risk of brain damage. But she couldn’t give too much fluid for fear of overwhelming his kidneys. To complicate things further, the latest lab results showed that his potassium levels were way to high which could cause heart arrhythmia and/or damage. They had to give him Lasix to help him rid his body of this excess potassium. This meant that more fluid would leave his body, and the need to monitor input and outflow was intensified. The razor blade again. Every time he urinated, his blood pressure dropped and she had to quickly give him more IV fluids. Fortunately, he could now take water by mouth.
By 11:30 the pharesis was completed. Derek’s white count was down to 111,000. They had removed half of his white blood cells. The chemo they had given him in his spine earlier was also beginning to break down the white cells. He is not out of the woods yet regarding potential for stroke, but things are moving in the right direction.
Just after midnight, the nurse came in to administer his first round of chemo. As of now, 12:30 a.m. Friday morning, they are finished. Derek is asleep. They are monitoring his potassium levels closely.
Just 27 hours after entering the doors of the ER in Corona, look where we are now! I have whiplash.
Thermoacidophiles
One interesting thing we learned about the numerous mineral pools in Yellowstone was that, even in the very hot acidic water, there are living organisms called thermoacidophiles. They are what gave color to many of the pools with shades of yellow, red, orange, and green. It was quite remarkable that anything could live in such pools, but thermoacidophiles thrive there. What a lesson for me: With God's strength, I can not only survive in the midst of problems, I can thrive there and even add color and enjoyment to the lives of those around me.
To Follow
To Follow
In the way that He leads me,
In sunlight and shadow,
'Cross mountain and valley,
My choice to follow.
In the way that He leads me,
His steps my way show,
With grace for the journey,
My joy to follow.
copyright 1/25/08
I wrote this poem a while back. I've been thinking of journeys lately. Much of my life journey is the result of my choosing, and some of my choices have not turned out the way I expected. Some of the most difficult parts of my journey were not my choice at all, but even in those areas I can still trust my way to Jesus. While the problems don't disappear, He still gives me the opportunity to have peace and joy. It's my choice.
In the way that He leads me,
In sunlight and shadow,
'Cross mountain and valley,
My choice to follow.
In the way that He leads me,
His steps my way show,
With grace for the journey,
My joy to follow.
copyright 1/25/08
I wrote this poem a while back. I've been thinking of journeys lately. Much of my life journey is the result of my choosing, and some of my choices have not turned out the way I expected. Some of the most difficult parts of my journey were not my choice at all, but even in those areas I can still trust my way to Jesus. While the problems don't disappear, He still gives me the opportunity to have peace and joy. It's my choice.
Yellowstone Trip Part II - Wildlife
While on our trip, a major highlight of our travels was all the wildlife we saw. Everywhere we went we were able to see some animals Alyssa and Jonathan had never seen before. Here are a few pictures: 
Bison, deer, and elk were everywhere, of course. 
We also saw two grizzly bears, but they were so far away it was difficult to get good pictures. 
And we saw several black bears. 
We visited a wolf and grizzly preserve where we saw bears and wolves up close. The bears were massive, and we got to hear the wolves howl. 
Bison, deer, and elk were everywhere, of course. 
We also saw two grizzly bears, but they were so far away it was difficult to get good pictures. And we saw several black bears. 
We visited a wolf and grizzly preserve where we saw bears and wolves up close. The bears were massive, and we got to hear the wolves howl. On our way out of Yellowstone in a neighboring National Forest we got to see our only moose. It was a cow with her calf.
We were really hoping to see some beavers and some bighorn sheep, but I guess that will have to wait until another time.
Yellowstone Trip
We just returned from a week-long trip to Yellowstone National Park. It was a long drive, but we had a wonderful time. We met some family and friends there and ended up with quite a large group which made it even more fun, and a bit challenging at times. 
We stayed one night in Jackson, WY, and the next day Alyssa and Colonel Vincent took a rafting trip down part of the Snake River where they saw bald eagles, osprey, deer, white pelicans, beaver lodges, and frogs.
While they were gone, Jonathan and I napped and walked around the quaint town. Here we are standing by one of four huge arches made entirely of elk antlers they shed each year.
Then we drove through the Grand Tetons and up to Yellowstone. The flowers were at their peak and were just gorgeous! 
We stayed one night in Jackson, WY, and the next day Alyssa and Colonel Vincent took a rafting trip down part of the Snake River where they saw bald eagles, osprey, deer, white pelicans, beaver lodges, and frogs. While they were gone, Jonathan and I napped and walked around the quaint town. Here we are standing by one of four huge arches made entirely of elk antlers they shed each year.Then we drove through the Grand Tetons and up to Yellowstone. The flowers were at their peak and were just gorgeous! The kids enjoyed playing in the water, playing on the rocks, watching fish in the water... and did I mention playing in the water? Of course, no one got wet.
While in Yellowstone, we stayed in a cabin in Canyon Village and made day trips from there to see sights around the park. Over the next few days, I will post some pictures of our excursions.
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